HLCA

The National Disability Insurance Scheme (NDIS) was developed following a significant social policy reform to the disability sector, and is part of Australia’s health care system. It provides individualised funding for people with a disability, under the age of 65. The aim of this funding model is to encourage self-determination (Reddihough et al., 2016). This report will provide a critical review of the schemes successes, including the focus on empowerment of participants and being flexible to their needs. Failures of the NDIS will be discussed including addressing delays, communication gaps and the skills of NDIS representatives. A reflection on the outlook of the NDIS demonstrates significant demand and financial responsibility of the scheme. A clear set of recommendations will be made with the aim to support the future of the NDIS, and ensure that its participants are given equality to the supports and services they need for greater independent participation and improved quality of

life.

Introduction

Australia’s healthcare system has undergone a profound reform in disability services for people under the age of 65 (Reddihough et al., 2016). The National Disability Insurance

Scheme (NDIS), described as a social policy, rolled out in 2013 (Olney & Dickinson, 2019).

It was developed as a result of a national public enquiry and Productivity Commission Inquiry, which found that many Australians living with a disability experienced a complex system which failed to meet demand (Reddihough et al., 2016). Reddihough et al. (2016) state that the ultimate aim of the NDIS is to encourage self-determination, improve the quality of life and level of independence for all Australians living with a disability. This report will critically review the successes and failures of the NDIS, provide commentary on the outlook of the NDIS, and include recommendations for its future improvement.

The NDIS is designed to provide individualised funding, and choice and control, over the access to services and support participants receive (Olney & Dickinson, 2019). Once deemed eligible, participants are allocated an individualised budget through a support plan, completed in collaboration with a representative (planner) from the National Disability Insurance Agency (NDIA). This sets out their goals and requirements for supports and services, and directly provides funding for them to choose their services and supports from the market (Cukalevski, 2019). This process requires the participants, or their support person, to be able to articulate their goals and vision.

Lakhani, McDonald & Zeeman (2018) claim that there are barriers to engagement with self-directed models for people with disabilities particularly relating to professional support with organising the resources. Olney & Dickinson (2019) also found that in practice,

“resources are not consistently available to participants” (p. 285), in part due to the requirement for approved services and otherwise attributed to the availability of a skilled workforce including in rural and remote regions of Australia.

Reddihough et al. (2016) document that when compared to traditional agency-based services, there were significant advantages to participants and their families with individualised funding models. The NDIS acknowledge the specific needs of particular groups such as those with complex needs, early intervention for children, or those whom are culturally and linguistically diverse (CALD). One of the strengths of the individualised care under the NDIS is that participant needs are reassessed as their circumstances change including at key transition periods, and at the scheduled plan review dates. This flexibility has the possibility of leading to a “more comprehensive identification of unmet needs”

(Reddihough et al., 2016, p. 69). Unfortunately this process has been met with complaints, as the Commonwealth Ombudsman’s report conducted in 2018, noted that some participants were waiting up to 9 months for these plan reviews, thereby undermining the flexible review process entirely (Lyons, 2018).

Adults must be enabled to make their own life decisions. Enabling this opportunity and authority to do so has been described by Reddihough et al., (2016) as one of the major legacies of the NDIS. Having choice and control has been strongly linked with client satisfaction that their supports are reasonable and necessary (Mavromaras et al., 2018). Lakhani, McDonald & Zeeman (2018) stated that a 2016 survey of 70 participants (out of 489 that were contacted), found that over half indicated that the quality of services and level of choice improved under the NDIS. Reddihough et al., (2016) states that the NDIS promotes individualised and tailored support which aims to lead to more appropriate accommodation options and access to employment, all with the intended goal to reduce the financial gap between people with and without disabilities. The NDIS Act additionally supports individual autonomy and decision making including risk enablement; that is, the right to take risks and make mistakes, inclusive of financial ones (NDIS, 2019). The NDIS acknowledges that this can be an important part of developing life skills.

Participants have increased autonomy with their services and supports, under the concept of ‘choice and control’, however requests are assessed against a ‘reasonable and necessary’ criteria. This requires service users to have the capacity to understand and the ability to adapt to this new framework (Olney & Dickinson, 2019). Under the NDIS Act, people with a disability have presumed competence, that is, they have the “capacity to determine their own best interest and make life decisions” (Cukalevski, 2019, p. 8).

Cukalevski (2019) however notes that this presumption can create difficulties where a person in fact requires support. The steps involved in developing and implementing an NDIS plan, including managing and using funds, requires high level decision making skills, something which Cukalevski (2019) states the NDIS has no current decision making support regime for. There are both financial and equality implications of the omission of such supports to participants, and to the NDIS.

Participants who have complex support needs require competent planners who have specialist skills and a person-centred approach (Hamilton, 2016; Collings, Dew & Douse, 2019). Literature states that an early evaluation of the planning process showed that plans had been rushed, were inequitable or were inconsistent (Collings, Dew & Douse, 2019).

Olney & Dickinson (2019) describe the planning process as a person’s introduction to interacting with the NDIS, and note that fractures to this relationship may be difficult to overcome. A review completed by NDIS in 2018 demonstrated that some participants reported that the NDIS representative they interacted with did not have the essential skills or knowledge relating to their disability. It has been shown however, that engaging those who know the participant in the planning process, and planner skills such as knowledge about the system and effective communication, supported a participant to have a better plan outcome (Collings, Dew & Douse, 2019). Positively, Mavromaras et al., (2018) found in their research that almost all of their participants reported that the planning process got easier over time due to increased confidence and knowledge of the NDIS.

There has been strong critique of the NDIS with the delay between participants being accepted onto the scheme and accessing funding. Additionally, delays are acknowledged when participants are waiting for outcomes of requests for assistive technology. Both of these types of delays can lead to increased support needs during the waiting period. Delays in access to healthcare can result in poor health outcomes and patient satisfaction (Saunders &

Carter, 2016). Houston et al., (2020) also describe interface challenges between the NDIS and hospitals relating to discharge disruption and prolonged hospital admissions, secondary to delays with accessing the NDIS for people with disabilities. Extended hospital admissions can affect patient morbidity and health status, increased hospital costs and exacerbate patient experience and wellbeing (Houston et al., 2020).

One of the potential causes for NDIS delays discussed in the literature are that processes and guidelines for the NDIS are still emerging as the scheme develops (Dowse, Wiese & Smith, 2016). Olney & Dickinson (2019) state that the scheme was “enacted swiftly to capitilise on rare bipartisan public and political support” (p. 275), however that the roll out is “outpacing the readiness” (p. 275) of all involved including participants, providers and the agency. Reddihough et al., (2016) acknowledged that trialling the NDIS was critical due to the size and scale of the scheme, however learnings from trial sites may not have had sufficient time to be realised prior to the full implementation of the scheme.

Encouragingly, once participants received their stated supports, Mavromaras et al. (2018) claimed that the level of participant satisfaction and confidence with the quality of supports was high throughout their research. Processing time between requests and automatic plan reviews has also been identified as an issue by NDIS, who have implemented automatic extensions of plans and rollover of funding until the review is able to occur (NDIS, 2020).

Requests for supports and services are assessed against a ‘reasonable and necessary’ criteria. Ambiguity remains regarding what constitutes these guidelines and the skills of those assessing against them. The design of the NDIS requires providers and people with disabilities to process complex information (Olney & Dickinson, 2019). Despite equity being a major aim of the NDIS, Olney & Dickinson (2019) found that participants continued to

have difficulties navigating the NDIS. Lackhani et al., (2018) concurred that there is a consensus in the literature that participants had a general lack of understanding of the selfdirected approach of the NDIS. Examples of this include where people were not familiar with making choices or advocating for themselves, and have a lack of clarity about what the NDIS consider as ‘reasonable and necessary’ (Olney & Dickinson, 2019).

A major failure of the NDIS involves significant barriers for communication with NDIS for both participants and providers, including no specific point of contact (Howard et al., 2015). Howard et al., (2015) states that communication and coordination are critical. Currently the NDIS planner has a role limited to information provision, however this support should be broader and longer than what is currently provided (Howard et al., 2015). Further, there remains only one common contact number and email address for both providers and participants to access NDIS instead of a direct individual or department contact. This results in delays with communication between both NDIS and the participant, and NDIS and providers. A review by NDIS in 2018 also demonstrated that participants reported that they had issues with the NDIS technology, as was similarly reported by NDIS representatives in being able to respond to participant questions or gather necessary information.

The NDIS is funded by a combination of sources including Federal and State governments, and the Medicare Levy, which is paid by Australian taxpayers (Krassnitzer & Willis, 2016). It is a demand-driven, uncapped scheme which is estimated to cost $21.5 billion in 2019-2020 (Buckmaster, 2018). There was broad public and political support at the time the NDIS was initiated, however there remains political pressure in managing the funds appropriately.

According to the NDIS COAG 2019/20 report, there are currently 338, 982 participants accepted onto the scheme, with 134, 455 receiving supports for the first time. This demonstrates a broad reach to new participants and an increased demand than previous disability services. NDIS is predicted to provide individual plans for an estimated 500,000 participants who will require support from disability providers (NDIS, 2020). NDIS takes a lifetime approach to providing supports to people with a disability (NDIS, 2018). The demand for disability supports is undeniable and expected to continue particularly with Australia’s ageing population, therefore putting greater pressure on the system to remain sustainable. NDIS COAG data for 2019/20 state that there has been a 14% increase in community participation and 2% increase in employment for participants, after 3 years of having an NDIS plan. Whilst the social and community participation increase is pleasing, the marginal increase in employment is not representative of the aim of the NDIS to reduce the financial gap between those with and without a disability.

One significant factor pertinent to the sustainability of a quality system, is the availability of a sustainable and skilled workforce. The complex support needs of participants require “depth and diversity of the workforce skills” (Dowse, Wiese & Smith, 2016, p. 55). This is especially evident in rural and remote areas of Australia where attracting and retaining therapists is already difficult (Dew et al., 2016). Under the NDIS, Cortis et al., (2018) found that there was only 12% of employers who were able to provide pathways for career advancement. Further, the set unit NDIS prices for providers are not reflective of gradations in provider skills and experience (Cortis et al., 2018). As a result, this impacts on the attraction of new skilled workers to this field, which Cortis et al., (2018) state is necessary for the scheme to expand.

Olney & Dickinson (2019) reflected the review of NDIS costs by the Australian Governments independent economic research and advisory body in 2017, citing that the financial sustainability of the scheme depends on two factors; the balance of economic and social participation; and that funders believe the scheme to be affordable and representing value for money. The Productivity Commission (2011) acknowledge that effective commercial management is vital to the sustainability of the NDIS. The NDIS takes an actuarial approach to spending over a person’s lifetime (Kendrick, Ward & Cheowith, 2018). The rationale for this is that the insurance model makes short term investments which are aimed to reduce long term costs by increasing independence and social participation of the participant (May et al., 2016).

A further reflection of the NDIS financial expenditure must focus towards the funding of assistive technology (AT). Currently there are no ceiling limits or formal price guides for the prescription of AT for providers, other than requests being assessed by the ‘reasonable and necessary’ criteria. Whilst the NDIS cite that AT recommendations must show value for money, this remains a loose guideline for providers. Further, when a piece of AT is provided to a participant, the ownership remains with the participant. There are many reasons a participant may no longer require their AT including it being no longer suitable, deemed unsafe by a provider, or due to assistive technology abandonment. AT disuse has been described by Johnston et al., (2014) to be as high as 1/3 of all prescribed. Currently there is no system for the participant to return AT to the NDIS. This inhibits the NDIS utilising a reissue scheme for refurbishing and redistribution of AT to other participants to assist with cost management. The financial and material waste related to this has not been acknowledged nor measured by the NDIS. Further, liability for abandoned AT has not been established in the event a member of the community obtains ownership of this typically customised and expensive AT.

1. Planners (or Local Area Co-ordinators) must have appropriate skills and experience to work with people with disabilities, and their families. This includes skills such as communication, goal setting and capacity building to ensure that plans are individualised, realistic and encompass the vision and goals of the participant. Planners must also be able to recognise or request formal assessment should the capacity of the participant be a concern, to ensure that planning process decisions are completed inclusively.

2. NDIS to develop a re-issue system for assistive technology to better manage resources, reduce unnecessary spending and reduce material waste. This would also reduce risk of abandoned AT being accessed by the community without appropriate assessment/prescription. The NDIS could model this on previous state based systems and utilise their existing resources and systems to fast track this recommendation.

3. NDIS should consider ceiling limits or price guides for particular assistive technology to manage costs to the system. These must have some flexibility to address individual needs, however may drive increased competition in the market.

4. NDIS must develop a separate pathway for providers to communicate directly with NDIS relating to participant outcomes. This strategy will increase efficiencies with communication and completion of outcomes for the participant and provider, therefore resulting in reduced cost to the NDIS.

5. NDIS must complete a review of its existing pathway for plan reviews and AT applications to determine the reasons for lengthy delays. This report has highlighted the potential poor health outcomes for participants and the broader health system when they are exposed to delays with accessing the services and supports they need. The implications of not providing the support when the participant requires it is likely increased need and further financial demand on the system in the longer term.

6. Given the high volume of new participants to the NDIS and the discussion earlier relating to poor understanding of the NDIS, a peer-support model to navigate the

NDIS for new participants would be ideal (Lakhani, McDonald & Zeeman, 2018). This has the ability to have reciprocal benefits to both participants with empowerment and skill development.

7. In order to meet its major aim of increasing autonomy for participants, the NDIS must develop a decision making support regime secondary to the requirement for participants to make complex decisions throughout their planning pathway.

Cukalevski (2019) convincingly states that “support systems and practices are the building blocks of all social networks” (p. 3). Supplemented access to supports to enable people with disabilities to have full and equal legal rights to make a decision was advocated by Cukalevski (2019), in order to achieve inclusive equality.

The NDIS is an ambitious social policy and a significant reform to the previous disability services prior to its introduction. It is clear when reflecting on literature findings about the NDIS that the scale and pace of its transition will inevitably come with ‘teething problems’. The individualised funding and aim for self-efficacy for participants under the NDIS is mirrored in other progressive international countries (Olney & Dickinson). The NDIS has shown to improve the independence and quality of life of a significant amount of individuals with disabilities, many for the first time. Outcomes discussed in this report demonstrate that the longer a participant is in the scheme, the better their experience and achievement of goals are. This report however highlights that there are still improvements and learnings to be made by the NDIS, particularly in areas such as communication and internal processes to reduce delays and improve the skills of its representatives. The public interest and political agenda should drive the NDIS towards quality improvements in order to achieve sustainability of the scheme. The recommendations detailed in this paper reflect a range of short and long term strategies to improve the experience of the participant and the sustainability of the system. These areas for improvements must be addressed by the Australian Government, alternatively as Olney & Dickinson (2019) note, the risk is that the scheme will be irredeemably tainted.

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