Submission to the Joint Standing Committee on the National Disability Insurance Scheme’s Inquiry into Independent Assessments
Young People In Nursing Homes National Alliance March 2021
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Introduction
The Alliance does not support the implementation of the Independent Assessments (IA) model as described by the NDIS and government.
Implementing this radical departure from the scheme’s imperatives has the potential to not only undermine the human rights elements of the NDIS, but irreparably compromise the scheme’s leading approach to individualisation of services.
We are deeply concerned about what happens to people who are either refused continued funding by the scheme; or are underfunded by an arithmetic algorithm used to determine funding in plans. As committed co-funders of the scheme with the Commonwealth, the States and Territories are no longer in a position to reconstitute separate disability support programs for the people the NDIS refuses to assist. As a result, there is a serious risk that people will be left unsupported and the gaps in disability support that the NDIS was implemented to close, will return.
While there is most definitely a need to develop complementary programs in the jurisdictions for people with disability to enable greater access to housing, community mental health and rehabilitation, this is a longer term process requiring proactive Commonwealth collaboration with the states and territories if it is to succeed.
As well as engaging with people with disability and their organisations, greater consultation is needed across all tiers of government to examine how the scheme’s risks can be addressed. Implementing such a radical change as Independent Assessments without effective explanation or strategy and while the latest ‘trial’ continues, is disingenuous at best.
Whether consideration should be given to renegotiating the jurisdictions’ NDIS bi-lateral agreements or not, the Independent Assessment “initiative” is certainly not the place to start a deeper consideration of how identified NDIS risks can be proactively managed across both levels of government.
The Alliance therefore supports a moratorium on the implementation of Independent Assessments and algorithmic funding so that a broad ranging consultation with all stakeholders about NDIS risk management can be undertaken.
NDIS Act 2013
We believe the scheme is broadly well designed in the existing legislation. Despite the need to amend some poorly drafted sections, such as S29B that strips participants of their NDIS eligibility should they enter residential aged care for the first time after turning 65; and
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S31(k) that limits service coordination only to disability supports[1], the core design of the scheme that includes individualisation, uncapped budgets and inherent flexibility should remain.
While the Tune review did examine some operational areas of the scheme, it was a very narrowly focused and selective review. As such, the Tune Review should not be seen as authoritative when considering changes to the NDIS legislation.
Having the experience of New Zealand’s Accident Compensation Commission and Australia’s lifetime support schemes over several years as a guide, it is understandable that governments can become nervous about potential cost pressures in these types of schemes. Yet Victoria’s Transport Accident Commission (TAC) which has been in existence for nearly 35 years and faced periods where sustainability has been questioned, has matured and continued to grow without recourse to capping budgets or fundamentally changing its process or intent. With the collective experience of these schemes and the numerous policy levers available to the Commonwealth, there are many ways to address any sustainability issues facing the NDIS without resorting to stricter limits on eligibility and removing individualised planning for participants.
Managing the scheme’s long term liabilities is an extant challenge for the NDIS and for the governments that fund the scheme. Based on the design of other no-fault lifetime care schemes in Australia and overseas, the NDIS model that is individualised and has uncapped funding has proven to be effective and manageable. Enabling individualisation and flexibility, funding decisions based on the participant’s circumstances are one of the great strengths of the NDIS and must be protected at all costs, as should its investment in decision making and relationship management.
While risk and liability management are key to ensuring the scheme’s fiscal sustainability, the proposed move to Independent Assessments ignores crucial risk management priorities, including how to manage system failure in those mainstream sectors the NDIS interacts with; and how to achieve co-funding arrangements to share risks with other service programs.
The first section of this submission highlights the risk management approaches the Commonwealth should be addressing before taking the unprecedented and unnecessary step of introducing Independent Assessments and algorithmic funding. The second section details the key problems with the implementation of Independent Assessments for the Younger People In Residential Aged Care group (YPIRAC).
[1] Amendments to these sections were proposed by the Alliance in submissions and in consultations to the Tune Review but were seen as out of scope and overlooked in the review report. See YPINH Alliance submission to the Tune Review 2019.
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Part 1. Failure to implement sustainability measures
While the NDIS is a more ambitious undertaking than the state lifetime support schemes, it has access to a wider range of options to comprehensively manage its risks than these other schemes do. We do not believe the NDIS or the Commonwealth has done enough to address recognised risks since full scheme was achieved in 2016.
As example, the NDIS has not engaged with other service systems to identify and manage shared risks through the transition from state disability systems. Nor have there been comprehensively efforts to make the scheme more efficient and effective through policy engagement and collaboration with its state and territory partners. Indeed, the Commonwealth has been unable to move beyond its historic adversarial approach of cost and blame shifting to the states and territories, despite this being part of the promise of moving to a social insurance system for funding disability services.
If it was to be considered at all, the fundamental change to the scheme’s design that the IA represents should be a last resort, brought into play only when the scheme is in peril and after strategies to address sustainability risks have failed. We are most certainly not at this point. Indeed, there are a great many policy and operational areas of the scheme where the NDIS can improve its sustainability and strengthen its liability control.
There are a number of areas where sustainability can be de-risked that have been ignored. Instead, the punitive measures of independent assessments and algorithmic planning and funding responses are proposed to target participants for the scheme’s policy and operational failings.
Areas where sustainability and risk management has either been ignored or inadequately implemented include the following.
1. Full implementation of the National Injury Insurance Scheme (NIIS)
The NIIS and the NDIS are critical parts of the COAG’S disability reform agenda. Because the NIIS raises premium income and doesn’t rely on government budgets, it is critical to the financing of the NDIS. In 2011, the Productivity Commission estimated the national per annum cost of catastrophic injury as $1.8b, with the additional annual cost to be covered by the NIIS to be $835m.[2]
In making its recommendation to establish the NDIS, the Productivity Commission had the National Injury Insurance Scheme as an integral part of its model. Yet the NIIS remains only partially complete, with the implementation of the general injury and medical streams stalling in 2017. In its submission to the Productivity Commission’s Costs study in 2017, the NDIS said in its first submission that
[2] Productivity Commission, Disability Care and Support Inquiry Report, Volume 2, Canberra, 2011: 906-907
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Key policy settings include delivery of mainstream services consistent with the National Disability Strategy and introduction of National Injury Insurance Scheme (NIIS) principles. These policy settings are fundamental for management of long term financial sustainability in line with Scheme design principles.[3]
In its second submission to the review, the NDIA went on to say
The NDIA notes that the original modelling underpinning projections for Scheme costs assumed that the National Injury Insurance Scheme (NIIS) would cover costs as intended. Wherever State and Territory NIIS schemes do not bear this cost, the additional cost borne by the NDIS places Scheme sustainability at risk.[4]
In its final report of the NDIS Costs Review, the Productivity Commission reported modelling on the NIIS provided by the NDIA that demonstrated that the additional cost of not implementing the medical and general injury streams of the NIIS would create growing and significant additional costs to the NDIS:
But over time, as new people enter each year, there is a cumulative effect. To illustrate, modelling undertaken by the NDIA suggests that the cost to the NDIS of the medical and general schemes not operating would amount to about $23 million in 2018-19.but would increase to about $226 million in 2025-26 and to about $1.3 billion in 2040-41).[5]
While the implementation of the NIIS requires all governments to participate in a coordinated implementation exercise, the Commonwealth has had the primary national coordination role. Since the motor vehicle and work injury streams were completed in 2016 there has been no visible action on the remaining streams of the NIIS, and the Commonwealth has not fulfilled its coordinating role despite the NDIS admitting the non-completion of the NIIS created a sustainability risk to it.
The Commonwealth’s failure to drive the complete implementation of the NIIS is adding costs to the NDIS that are borne directly by the Commonwealth.
While the NIIS is not in the portfolio responsibility of the NDIS Minister, the significance of the cost shift to the Commonwealth while the NIIS remains incomplete should signal that action is required. The fact that this has been left to drift demonstrates a serious lack of attention to policy and risk management around the NDIS implementation.
[3] NDIS Submission to the Productivity Commission Review of NDIS Costs 2017: 117
[4] NDIS Supplementary Submission to the Productivity Commission Review of NDIS Costs 2017: 33. Emphasis added.
[5] Productivity Commission, Review of NDIS Costs Inquiry Report, Canberra, 2017: 259
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2. Scheme intersection with other service systems
Critically important to the scheme’s fiscal sustainability, the intersection of the NDIS with other service systems has been identified as a risk and a policy area needing resolution since the scheme was first established. Yet in the five years since the NDIS reached full scheme, very little has been done to develop the collaborative working arrangements needed. Whether joint funding, cooperative pathways or shared policy objectives, neither the commonwealth nor the NDIS has engaged in genuine cross system dialogue with the intention of resolving the wicked dilemmas that continue in this area.
As example, the Royal Commission into Aged Care Quality and Safety (ACRC) has recommended that Commonwealth and State and Territory jurisdictions work together on housing and hospital discharge,[6] something that has been called for many times previously. Despite this latest call to act by the ACRC, neither the Commonwealth nor the NDIS has the machinery or the experience to engage fully in or to deliver truly collaborative outcomes.
In his 2019 Review of the NDIS Act, David Tune commented on some jurisdictional attempts to engage saying
The most significant outcome to date was the DRC’s agreement in June 2019 on how the NDIS interacts with the health system and how the NDIS will support families with children who are unable to live in the family home because of their complex support needs. Further progress was also made at the DRC’s October 2019 meeting in regard to improving the provision of transport supports under the NDIS and interface issues with mainstream mental health and justice systems.[7]
Despite these attempts and the scheme’s recent appointment of Health Liaison Officers (HLOs) and Justice Liaison Officers (JLOs); despite the (re)framing of the NDIS intersection with other systems through the DRC, the NDIS and the Commonwealth continue to see engaging with other service systems as a question of ‘who pays for what’, rather than the development of practical collaborative arrangements around co-funding and risk management that it should be instead.
As a result, the intersection of the NDIS with the health system is yet to address such fundamental policy and operational gaps as the transition of long stay hospital patients or shared responsibility with health programs for rehabilitation or palliative care. The extent of the NDIS interaction with the health system is presently limited to seeking evidence from health services for its own decisions, or didactically reinforcing the funding boundaries
[6] Royal Commission into Aged Care Quality and Safety, Final Report: Care, Dignity and Respect, Vol 1, Commonwealth of Australia, Canberra, 2021: 256.
[7] Tune, D. Review of the NDIS Act 2013, Removing Red Tape and Implementing the NDIS Participant Service Guarantee, Canberra, December 2019: 96-97.
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between the programs. The Alliance sees no evidence of genuine program sharing or integration of health and disability services.
Until there are sophisticated joint funding and cross-program service coordination arrangements, the intersection of the NDIS with other system remains as immature as it was at the launch of the scheme. It also means that the scheme has no defence against cost escalation that may be a result of systemic complexity caused by gaps in the operation of multiple overlapping government service programs utilised by NDIS participants. Wishing away or denying complexity does nothing to manage it effectively.
3. The NDIS: A siloed program
Despite the fact that its participants frequently engage in other government programs and liaison and positive engagement is required from the NDIS consequently, the scheme has evolved as one of the largest funding siloes in government with all the negative behaviours that accompany siloed approaches to engagement.
Always on the defensive as it instructs other service systems in how the scheme expects them to behave, the NDIS has completely squandered the opportunity to partner and collaborate with these other service programs to the betterment of itself and the services concerned, as well as the people with disability they are supposed to be supporting.
In his review of the Victorian service system reform efforts, Professor Peter Shergold’s comments on the siloed nature of that system are pertinent to the NDIS’ siloed behaviour now. The former head of Prime Minister and Cabinet stated that
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]
He then said
Transformative change will require a fundamental shift in the way the services system is conceived and in the manner in which public service agencies, community service organisations (CSOs), volunteers, philanthropists, corporate sponsors and – most importantly – service users see themselves as jointly responsible for its success.
This includes all actors in the system sharing a vision of how to work together effectively, as well as a mutual recognition of constraints and challenges. The
[8] Shergold, P. Service Sector Reform, A roadmap for community and human services reform, Final Report, Melbourne, July 2013: 4.
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result will be a sector of the future that will inevitably look different from today, which works to improve outcomes for vulnerable Victorians.[9]
Instead of seeking collaboration with other service programs such as health or mental health, housing or justice to address common concerns and alleviate shared, the NDIS has routinely and deliberately avoided doing so. In doing so, it has failed to create viable pathways that improve options for individuals as well as the funding programs they rely on and failed to address its own fiscal responsibilities.
One evident example is the area of rehabilitation which, according to the Principles to determine the responsibilities of the NDIS and other service systems (APTOS), is a shared responsibility of the NDIS and health systems.[10] But the NDIS has not sought to establish shared operations or developed rehabilitation pathways back to the community for people. Instead, it has routinely pushed responsibility back on to health systems, particularly concerning discharge from rehabilitation hospitals and the provision of enablement supports to people with brain injury in the community.
A further example is that until very recently, the scheme has refused to fund the personal care needs of younger NDIS residents. In doing so, it has argued that the scheme’s reimbursement of the Aged Care Funding Instrument (ACFI) to the Department of Health and the Aged Care Act’s stipulation that residential aged care providers must provide for the care needs of all residents in their services themselves, absolves the scheme from further funding responsibility. And this despite the NDIS being fully aware that the aged care system was never intended to manage the complexity of need younger residents present with and is certainly not funded to do so. Additional information about this issue is offered in Part 2 of this submission.
This antagonistic approach and willingness to blame aged care providers who are doing their best within their own system’s limitations, has left younger NDIS residents in aged care bearing the brunt of this appalling standoff. Instead of such adversarial behaviour, a central focus of the scheme’s risk management strategy should be to develop mechanisms that share the risks (and rewards) of the NDIS, not cost shift to other systems as has been the scheme’s wont to date.
Achieving this reform requires a significant policy and operational shift to whole of government responses at national, state and local levels of government. Yet as an indication about how little had been achieved by 2019 in this area, David Tune said
[9] Shergold, P. Op.Cit: 5. Emphasis added.
[10] Council of Australian Governments, Principles to determine the responsibility of the NDIS and other service systems, applied principles and tables of services (APTOS), see https://www.coag.gov.au/sites/default/files/communique/NDIS-Principles-to-Determine-Responsibilities-NDIS-and-Other-Service.pdf
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…this review heard there is a lack of clarity about the respective lines of responsibility between the NDIS and mainstream service systems. This is resulting in boundary issues and funding disputes, service gaps and confusion for NDIS participants, poor quality planning and inconsistent decisions about when a support is reasonable and necessary.[11]
In 2016, an NDIS Manager made a similar observation to a Senate inquiry, saying
The interface between the NDIS and other mainstream agencies has always been a grey area. We have the Applied Principles that were published when the scheme came into being, and they have just been revised and republished. Those are the Principles that inform the interface between us and other jurisdictions, but they are not specific enough for us to make a clear decision in every case.[12]
Yet no further progress has been made in this area since.
As much as the NDIS and government agencies want universal certainty, the business of a social insurance scheme that relies on ‘reasonable and necessary’ judgements will, by its very nature, be fluid and variable across different regions and demographic groups and this is a good thing. Indeed, as the central quality of the scheme, it should be celebrated as an innovative but proven way of managing legislative obligations and liabilities that, given the right structure and intent, can be delivered. Reducing this complexity to a yes or no response to requests in individual plans is poor public administration, overly defensive and reveals the scheme’s fundamental lack of confidence in its own procedures and processes; and in its ability to make robust and defensible decisions.
Going down this path avoids the well recognised responsibility the scheme has to manage the intersection with other service systems and simply tries to put a legislative lid on costs. Suppressing genuine need does not address or eliminate the need. It merely displaces it to another service system, or to individuals and/or to their families.
The NDIS has been lauded as a significant reform. However, the preference of both the NDIA and the Department of Social Services (DSS) for confrontation as a way of navigating intergovernmental dialogues is certainly not reformist and has done nothing to manage the risks and future liabilities of the scheme.
If the NDIS is to realise the national innovation this social insurance scheme should be, it can no longer rely on the rule-bound approaches that capped government funding programs used in the past. Instead, the scheme must prioritise good decision making logic; invest in
[11] Tune, D. Op Cit.: 95.
[12] Duncombe, L. Hunter Trial Manager in Hansard, Joint Standing Committee on the NDIS, 7 March 2016. See http://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22committees%2Fcom mjnt%2Fb02490da-1f4b-458b-a978-57e36ade0fa5%2F0006%22
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collaborative relationships with its participants, providers and mainstream programs; and proactively build the capacity of participants, their families and the communities they live in.
4. Provider management
The scheme’s structural lack of capacity to manage service providers is a major gap in its risk management strategy. Delegating provider management to participants who may not be in a position to exert any market power; or rely on support coordinators who have no mandate to undertake this task systemically, is a flawed approach that enables poor provider behaviour and cost escalation.
There has been a lively debate since the scheme launched about whether the NDIS should cap and control prices, a point also addressed in the Tune Review. While price caps can be helpful in controlling market extremes, on their own they are not sufficient to regulate the commercial behaviour of providers.
The Alliance has seen highly predatory and aggressive behaviour from service providers in the Supported Independent Living (SIL) area that participants, their advocates or support coordinators have been unable to counter. Nor have they been able to rely on a robust NDIS funding policy to rein in clear provider gouging.
This predatory behaviour has included rostering arrangements that have seen participants run out of funding prior to the end of their plan, as well as service bookings and service agreements that contain additional charges to participants outside SIL guidelines.
The bifurcated way in which both the NDIS and the NDIS Quality and Safeguards Commission have broken up the link between funding, provider management and data collection has meant that there is insufficient tension in provider management to strategically confront sharp practices by providers or the constant gouging that we have seen.
Because the NDIS Quality and Safeguards Commission waits for a ‘complaint’ to be raised before it becomes involved, it is unable to prevent this predatory and aggressive provider behaviour. Raising the issue in the form of a complaint after the fact, also puts the issue in a different context. Participants and their support coordinators may be quite happy with their service yet be completely unaware that the provider is gouging participants and the scheme.
Not having a dynamic provider management strategy also invites cost escalation. The super inflation in SIL is a current example of this. There are numerous reasons for this cost increase including SIL providers refusing to provide information to participants about the charges the SIL provider is levying. But from the Alliance’s experience, provider behaviour and opportunism is a very real contributor to this steep rise in costs.
Other lifetime support schemes have more direct provider management systems to address risks that the NDIS could learn from.
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5. Governance
The NDIS governance model was identified early in the life of the scheme as too decentralised and diffuse to be fully effective. Disappointingly, blame and cost shifting behaviour that is more reminiscent of pre-NDIS times has become far more prevalent than we had expected. No part of the scheme’s current governance structure has dealt with this effectively. The NDIS’ policy making is weak and inward looking and results in issues that are a drain on the scheme’s resources remaining unresolved.
As co-funders of the NDIS, it is critical that the scheme’s governance arrangements allow for risk sharing and risk management across both federal and state levels of government. A more sophisticated governance model, wherein the states and territories have a constructive role in the scheme’s risk management strategies, is something that has been called for regularly since the inception of the NDIS. The reality, however, is that this has been progressively sidelined by changes to the operations of the NDIS in recent years.
Should the NDIS introduce a system that reduces participant numbers, limits funding and leaves cross-program negotiation to participants through their ‘flexible budgets’ as the introduction of the IA methodology intends, opportunities to create system level arrangements that can improve participant access to mainstream services and result in savings in the NDIS will be lost. These cross-jurisdiction arrangements can only be made when the right incentives exist and governance agreements provide all funders with a seat at the table.
The cross-program collaboration that is urgently required must be systemic and ideally built into the governance structure. The proposed Independent Assessment model assumes that collaboration can be driven by individuals who have little if any knowledge or influence over how government support programs operate; and who most certainly have no influence on the development of funding arrangements.
The risk with the flexible budgets approach used in the IA model is that too much will be left to chance. Younger people in residential aged care (RAC) barely have the opportunity to negotiate with their disability and aged care providers, let alone make arrangements with health, housing, mental health or other programs and integrate these with their NDIS supports. These pathways and structures that enable program sharing around individuals must be embedded in the scheme’s governance and design. Without the states and territories at the table as genuine partners, we have already seen the NDIS’ default position become one of distrust and cost shifting to other service programs.
The judgement by the Productivity Commission in its 2011 report that the NDIS would deliver a net economic benefit to Australia was predicated on the ability of the scheme to unlock efficiencies and reduce duplication in a range of existing government programs. Redesigning the NDIS to only deliver a reduction in its own expenditure and shift costs, while ignoring calls to work with State and Territory jurisdictions and the mainstream service systems they are responsible for to realise these macro-economic benefits, is short
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sighted and poor economic management. Under such circumstances, the scheme cannot deliver the economic benefit envisaged.
6. Policy formulation
It continues to defy belief that, at full scheme, this $22b national program does not have an autonomous policy making function. Such a policy function must be established as a matter of urgency.
Not only would this build capacity in the scheme; it would also provide mechanisms to resolve many of the thorny transition issues now in play and do so at source. The Alliance believes it is entirely possible to maintain national consistency in delivering the scheme’s main functions of eligibility and reasonable and necessary supports, while enabling local variation and discrete protocols with programs and providers to be successfully enacted.
As it is presently designed, the NDIS is too dependent on other Commonwealth structures and too vulnerable to market behaviours to effectively manage the range of risks it faces over the long term. Its reliance on the disability services “market” to deliver the social and economic outcomes the scheme requires for its participants, is an indirect and ineffective strategy. Without genuine policy agility and a willingness to create local arrangements and cohort specific responses, the NDIS remains vulnerable to cost risks and policy impasses it cannot solve on its own.
The NDIS clearly needs its own independent policy making capacity to be able to manage its risks and provide mechanisms to develop agreements and protocols at the scheme’s boundaries. Having the policy making function sitting remotely with the Department of Social Services should have been an interim measure only. Rescinding this arrangement is long overdue.
Now that it is at full scheme, the NDIS requires the tools to determine its own decision making arrangements at all levels. This is particularly so with regard to the Independence, Linkages and Capacity Building (ILC) framework; the work of Local Area Coordinators and Coordinators of Support; and the scheme’s address of mainstream interface imperatives. The NDIS does not exist in a bubble and must negotiate all these areas, engaging directly with sectors, governments and communities far more comprehensively than it has done thus far.
Finally, unless the NDIS takes an active role in its own policy arrangements, the scheme’s policies will be decided in ways that are outside its control. While utilising the arrangements of the Disability Reform Council may have been necessary in trial, this arrangement is now well beyond its use by date. The scheme must engage with the appropriate portfolio ministerial council for the issue is it seeking to pursue, whether that be the Education, Health, Closing the Gap or Federal Financial Relations Councils. It cannot continue to presume that the DRC can seriously influence the work of these other councils.
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7. Principles to determine the responsibility of the NDIS and other service systems, Applied Principles and Tables of Support (APTOS)
The Alliance has long argued the APTOS should be replaced with a more sophisticated set of agreements that promote cost sharing and collaboration across government programs as part of a contemporary, joined up government administration arrangement.
In determining principles for the division of responsibility between the NDIS and other service systems, the Commonwealth was quick to draw boundaries around the scheme and community service supports.[13] This was undertaken before any machinery to reconcile or negotiate the inevitable boundary issues was in place. The application of these applied principles has made it far more difficult to arrange concurrent supports from multiple service systems for people with complex needs.
With the experience of 5 years of full scheme rollout to draw on, the APTOS must be revised as a matter of urgency, mandating joined up rather than single program responses and the traditional cost shifting these have enabled to date.
In this regard, the rushed implementation of Independent Assessments means the Commonwealth is not giving due consideration to whole of government issues or the wider agenda of disability policy reform. As indicated earlier in this submission, this reluctance to engage in cross-program collaboration misses significant opportunities for proactive risk management and liability control that the scheme must embrace.
As Peter Shergold observed in his report to the Victorian Government
To be successful, the reform process depends on greater collaboration and coordination both between service providers and public service departments and across various government entities. Improving system coordination through collaborative governance arrangements…involves a coordinated and integrated approach by government and other agencies…[14]
Should the scheme move to the Independent Assessment approach, the adverse impact on the states and territories will be significant, with increased demand for disability services that they no longer provide the most obvious result. Because existing health, mental health or education services cannot be substituted for disability services, people who are unilaterally excluded from the NDIS will have no services to fall back on.
As flawed as they are, the APTOS were at least an attempt to implement a national disability services program. Moving to Independent Assessments, however, is a fundamental
[13] See Principles to determine the responsibility of the NDIS and other service systems, applied principles and tables of services (APTOS) https://www.coag.gov.au/sites/default/files/communique/NDIS-Principles-to-Determine-Responsibilities-NDIS-and-Other-Service.pdf
[14] Shergold, P. Op.Cit: 12.
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departure from the original bi lateral agreements the jurisdictions entered into in good faith.
Part 2 Key concerns for Younger People In Residential Aged Care group (YPIRAC) with implementation of Independent
1. Independent assessments and participants living in aged care
Because of the way the NDIS funds their support, participants who live in residential aged care facilities are at significant risk of their support being underfunded. At present, the NDIS reimburses the Australian Department of Health for the cost of the Aged Care Funding Instrument (ACFI) paid to RAC providers to support each resident in their service.
Because it reimburses the ACFI, the NDIS expects the aged care provider to deliver the total support the younger person requires. There is no examination of what a particular facility can provide for a particular resident. Nor is there any acknowledgement that the Aged Care Act and the aged care system were never intended and are certainly not resourced to support the complexity of need younger residents commonly present with.
Instead, the NDIS has used the ACFI as an proxy for a S34 determination of reasonable and necessary supports for a participant in aged care.
With regard to additional personal support, equipment and behaviour support, the NDIS has the capacity to provide additional supports to people whose needs are greater than those the ACFI allows for. The scheme has recently developed a policy position and practice for providing this support called Additional Personal Care Support (APCS). However, this funding is something very few people are receiving.
The NDIS has been highly reluctant to offer this support or approve it when it is requested. On the rare occasions the scheme has funded these additional supports, they have done so because of strong advocacy on behalf of the respective participant. Otherwise, the scheme has actively sought to limit or reduce this type of funding at plan reviews.
Because the historic funding default for a younger person living in aged care has been the ACFI, our concern is that the algorithm used in an Independent Assessment may use the ACFI as the total amount available to support a person within an aged care facility. The case studies included as an appendix to this submission describe the difficulties people are already experiencing trying to obtain additional support from the NDIS where aged care funding is insufficient to meet their needs.
As well as missing key areas of support, the IAs are scheduled to be implemented in the middle of a government endorsed push to get younger residents out of aged care. The Commonwealth has committed to Targets announced by the Prime Minister in November 2019 as part of its Younger People Rn Residential Aged Care Strategy.
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These Targets are:
- No people under the age of 65 entering residential aged care by 2022;
- No people under the age of 45 living in residential aged care by 2022; and
- No people under the age of 65 living in residential aged care by 2025.
Because the YPIRAC group is not homogeneous and requires dynamic interaction with other service programs as part of their transition process to avoid aged care or move to the community from aged care, it is hard to see how the Independent Assessment methodology and the algorithmic funding it relies on can be a constructive part of work to achieve these targets. As a set and forget funding model, the Independent Assessments are not fit for purpose for the YPIRAC group.
Given that each person has specific needs and transition imperatives, an individualised approach is vital to ensure these arrangements are safe and sustainable for these younger Australians. Rather than treating the person’s disability in isolation from other interacting factors, the service gap between the aged care service’s support capacity and an individual’s level of need; and how this impacts the person’s disability and their social isolation within the facility’s institutional environment, are the areas that require assessment.
It is the Alliance’s experience that these moves require a highly structured transition with a range of skill building activities and routines for the individual, as well as staff training that must be built into support in the RAC. These include consideration of transfers, planning, exercising independent living skills in the RAC, learning how to use new equipment and directing support workers. These are clearly not the within the expectation or the remit of the ACFI.
The continuing need these younger people have for integrated multi program service responses means the NDIS cannot solve the YPIRAC issue on its own. It is therefore impossible to see how an algorithm or information gained from standard tools like the WHODAS will contribute anything specific to a person’s support in RAC in the context of wanting to move to the community or building the skills they will need to do so.
2. Redundant assessments
The risk that Independent Assessments will be redundant for younger people in residential age care is real. NDIS participants already living in RAC have not only met the access threshold for the NDIS, they have also met the Aged Care Assessment requirement for entry to residential aged care. There should be no question that, having passed through these assessments, that these individuals require significant support. The precise type and level of this support and the exploration of alternative options cannot be determined simply through an algorithm.
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For those people at risk of RAC entry, the Independent Assessments will not assist in the negotiation and design of an alternative support and housing option. Nor will it assist in the negotiation and design of a transition program to move to the community from aged care.
Fundamentally, the WHODAS cannot deliver a clear picture of a young person in RAC because these younger Australians are in an inappropriate and institutional setting. The questions asked will not reveal a true picture of the person’s needs and situation. Residents won’t, for example, be able to make a cup of coffee (a commonly requested task participants are asked to complete in an Independent Assessment) because there are no accessible facilities to do so. And whether they get on with those around them in such a contrived environment is an inappropriate framing of the social isolation and institutionalisation that are the consequences of living in aged care for these younger residents.
These younger people live in such a highly institutional setting that they do not have the choice over their lives that other people may. The lack of choice, the daily routines, the physical and mental deterioration that comes with living in RAC – something highlighted by the Royal Commission into Aged Care Quality and Safety – are environmentally driven consequences that are not organic to the disability of the resident. When these considerations are added to the context of the YPIRAC strategy, the assessment tools Independent Assessments rely on are clearly not fit for purpose.
3. System response to the YPIRAC issue
The Younger People In Residential Aged Care issue was one of the 3 priority areas the ACRC identified in its Interim Report, Neglect, in October 2019. A key point made in this report was that YPIRAC is a systemic issue involving multiple portfolios at both levels of government. Its resolution requires deliberate collaboration across these areas of government, including health, housing, aged care, mental health and disability services.
Following these observations in its Interim Report, the ACRC made recommendations in its Final Report, Care, Dignity and Respect, that the Commonwealth collaborate with State and Territory health and housing programs. Recommendation 74 includes direction that the Commonwealth go forward in
(e) developing hospital discharge protocols with State and Territory Governments to prevent discharge into residential aged care of any younger person
(f) developing, funding and implementing with State and Territory Governments programs for short-term and long-term accommodation and care options for any younger person who is:i. living in or at risk of entering residential aged care and
ii. not eligible to be a participant in the National Disability Insurance Scheme[15]
[15] Royal Commission into Aged Care Quality and Safety, Final Report: Care, Dignity and Respect, Vol 1, Commonwealth of Australia, Canberra: 256.
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In light of these recommendations, the introduction of Independent Assessments and its algorithmically derived budget model will make it extremely difficult to introduce the kind of collaboration and co-funding of supports for the YPIRAC group and hinder the establishment of new pathways consistent with the YPIRAC Targets as a result. By removing the ability to effectively target individual circumstances (particularly in RAC facilities with large numbers of younger people) and develop the kinds of cross-system collaboration that is required to create new pathways for younger people to avoid RAC placement, the Independent Assessment methodology assumes this collaboration will occur at the participant level – something that is clearly not the case when structural collaboration and cross government action is required.
It is unacceptable for the NDIS to undertake any assessment or funding plan for people in the YPIRAC group in isolation from other service programs that these individuals need to support them in their transitions. The NDIS must collaborate with state/territory health and other programs to achieve the Commonwealth endorsed YPIRAC targets.
For a number of people at risk of RAC entry, the experience of disability is new. These people are at the beginning of a long journey of recovery, adjustment and adaptation that is particularly challenging for those with acquired brain injury, spinal cord injury and for people with progressive neurological conditions.
People with psychosocial disability are also challenged in an aged care environment that is not set up to meet all their support needs. Many different services are required – both informal and formal. Each of these services needs to dynamically interact with others to match the recovery of the individual. The process of managing these different services and ensuring they are relevant and effective is a specialist role that does not currently exist in the NDIS ecosystem.
The Independent Assessment model also risks undermining the YPIRAC System Coordinators initiative the Commonwealth has announced to address the very cross sector challenges that have been identified for the YPIRAC group. This approach was developed in response to the work of the ACRC and is now part of the YPIRAC Strategy, of which the NDIS is a participating Commonwealth agency.
This initiative recognises that the YPIRAC issue requires more than a disability services response; and that younger people in RAC or at risk of RAC placement need a comprehensive approach to coordinating a range of services from multiple service systems. If the NDIS automates funding allocation and is not actively engaged in the transition processes, these vital multi program responses will be impossible to achieve.
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Conclusion: An alternative approach for the YPIRAC group
A prevailing issue that the Independent Assessment model does not address is the capacity and willingness of the NDIS to adopt different approaches for different cohorts. As a one size fits all funding model, the Independent Assessment methodology is completely unsuitable for the YPIRAC group.
The ‘My Plan’ model used by ICARE in NSW for planning and funding supports for people with newly acquired disability is a model that is fit for purpose for the YPIRAC group and relies on collaboration with treating teams and service providers.
There are multiple review points that align with the recovery and progress of the individual and funding can be changed to suit circumstances.[16] The ICARE case management model is also superior to the NDIS support coordination model for the YPIRAC group.
We recommend the adoption of a similar model for the YPIRAC group utilising the new YPIRAC System Coordinators announced in the 2020 Federal Budget to articulate and progress this approach.
The uncapped nature of the scheme is one of the great strengths of the NDIS and is, in fact, one of its key liability management tools. It must be protected and retained in S34. While it enables individualisation and flexibility, it also requires a significant investment in decision making and relationship management by the scheme.
The Alliance believes there are viable ways of managing the risks and operational challenges the NDIS faces that are already being successfully implemented in similar schemes, but that do not require the poorly conceived and designed model of Independent Assessments and algorithmic funding that is proposed.
The Alliance is keen to provide further evidence to the inquiry in public hearings or on request.
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References
Council of Australian Governments, Principles to determine the responsibility of the NDIS and other service systems, applied principles and tables of services (APTOS), see https://www.coag.gov.au/sites/default/files/communique/NDIS-Principles-to-Determine-Responsibilities-NDIS-and-Other-Service.pdf
Duncombe, L. in Hansard, Joint Standing Committee on the NDIS, 7 March 2016. See http://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22committees%2Fcom mjnt%2Fb02490da-1f4b-458b-a978-57e36ade0fa5%2F0006%22
National Disability Insurance Scheme, Submission to the Productivity Commission Review of NDIS Costs, 2017.
National Disability Insurance Scheme, Supplementary submission to the Productivity Commission Review of NDIS Costs, 2017.
Productivity Commission, Disability Care and Support Inquiry Report, Volume 2, Canberra, 2011.
Productivity Commission, Review of NDIS Costs Inquiry Report, Canberra, 2017.
Royal Commission into Aged Care Quality and Safety, Final Report: Care, Dignity and Respect, Vol 1, Commonwealth of Australia, Canberra, 2021
Shergold, P. Service Sector Reform, A roadmap for community and human services reform, Final Report, Melbourne, July 2013.
Tune, D. Review of the NDIS Act 2013, Removing Red Tape and Implementing the NDIS Participant Service Guarantee, Canberra, December 2019.
Young People In Nursing Homes National Alliance, Submission to the Tune Review, 2017.
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Appendix
Case Studies: NDIS provision of additional support for participants in residential aged care
A) Dean – 48 years, lives with advanced Huntington’s Disease
Dean requires full personal care and has limited communication due to the impact of Huntington’s disease. His RAC facility is the third one he has lived in as his disease has progressed. The RAC is inexperienced with HD as well as the NDIS and has not engaged in NDIS planning (2 plans). RAC do not know what the NDIS can provide and has tried to support the person with their standard roster and care model.
Unmet support needs
Continence – requires different continence pads to other residents and is not happy with the large pads offered as they are restrictive when he goes out. The RAC say they have exhausted their options through ACFI funding and will only supply standard pads
Communication – Dean has limited communication capacity and no augmentative communication system. There is an ongoing challenge with communication as the RAC does not have the time to sit and get through a simple conversation which can take up to an hour. The RAC has defaulted to not engaging in conversation but just seeking yes/no responses
Eating – Dean’s swallowing has deteriorated due to the progression of his HD. He needs active supervision and assistance for all meals but the RAC does not have the staff to do this consistently. Each meal should take 1-1.5 hours. He holds things in his mouth longer and may need a drink. Dean is not getting his full meal, is losing weight and lives with an increasing risk of choking and inhalation.
Engagement in activity – Dean attends activities in the facility but cannot participate as he needs 1:1 support to do so. 1:1 support is not provided to any of the residents attending, so Dean does not get the support he needs to get benefit from these activities.
NDIS planning
Dean’s 2019/20 plan had only 25 allied health hours and no additional personal care hours because the planner was very firm that the RAC had primary responsibility for Dean’s support (including allied health services and personal care) and the NDIS was not about duplicating services. The RAC provider could not fund the required assessments or provide the individual support Dean required.
Dean’s 2021 review was held recently and was a 3 hour meeting. His community access hours were increased (x3). The need for additional allied health and personal care hours was raised by the SC and family but the planner advised that because of the size of the request, a higher delegate would need to approve the plan and there was a risk that the 2020 plan amount may even be reduced further. Because of this advice, the requests for allied health and additional personal care were not made. An SDA Assessment was included as it was decided that Dean was at high risk remaining in the RAC facility and the goal was for him to
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move. While this takes place, Dean remains at significant risk with his swallowing and is very isolated because of his communication issues.
The planner also advised the family that if they felt Dean was being underserviced by the RAC provider, they should pursue a complaint about the provider for not delivering adequate services. The family made a complaint to the Aged Care Complaints Commissioner and as a result, the relationship with the provider has soured. The complaint is ongoing.
B) Andrew – 50 years, lives with ABI and physical disability
Andrew lives with an acquired brain injury and physical disability. He requires dedicated PEG feeding, has involuntary movements and poor head control which result in a constant risk of choking. His head position must be monitored so that it does not fall forward and block his airway. He is a 1:1 and 2:1 for all transfers.
With deterioration in his condition and insufficient personal support hours in his NDIS plan, Andrew’s sister has been providing 4 hours per day in support to ensure his needs are met. However, this is not sustainable as his sister’s mental health has deteriorated as a result. A request was made for an increase of an additional 4 personal care hours daily to the NDIS. The request was refused by the planner.
Extra physiotherapy hours to work on muscle conditioning for Andrew’s head position were also requested but were rejected by the planner.
When NDIS funded 1:1 workers are not present, Andrew is moved to a dementia unit which has only 4 staff for 30 residents.
The Additional Personal Care Supports that are in the planner guidelines for YPIRAC planning were not mentioned and the process was not activated by the planner.
An NDAP advocate is working with Andrew and his sister and the state health department to try to resolve the risks for Andrew.
C) Andrea – lives with tetraplegia, 66 years
Andrea lives with tetraplegia, requires full care and has resided in RAC for 3 years. She entered RAC with a state government disability support package and utilised this for her personal care routine. Her morning personal care routine takes between 3-4 hours and includes a bowel routine and care to retain skin integrity. As the RAC cannot provide more than 15 minutes in any one attendance to residents, they cannot fully meet her personal care needs. As a result and over 5 plans, the NDIS has provided for 4 hours per day of personal care.
While this has been in her plan consistently, each review has involved significant advocacy in order to retain her hours, with successive planners and delegates being initially unwilling to include it in plans because of the agency position that all support to residents in the RAC is the RAC provider’s responsibility.
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At her latest plan review, a planner supervisor reminded Andrea that her personal care was the responsibility of the RAC provider and the NDIS was already paying for this support and will not fund things that should already be covered in that funding. She also said that while she is still eligible for the NDIS, as Andrea was over 65 she was well into the aged care age category and as such, she should be looking to the aged care system to meet her needs.
The planner and supervisor were however supportive of Andrea moving to the community and were encouraging of her desire to find an appropriate SDFA setting.
This left Andrea worried that because of her age the support she has had in her previous 5 plans would not be continued while she remained in RAC.
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