Parliamentary Joint Standing Committee on the

National Disability Insurance Scheme

New inquiry into the capability and culture of the NDIA

Jennifer Street, Little Bay NSW 2036 t. 1800 819 775 w. scia.org.au abn. 93 001 263 734

About Spinal Cord Injuries Australia
Introduction / Executive Summary
Recommendations
How inequality in the NDIS is impacting access and service delivery
The need for Assistive Technology
Reforms to the Planning Process
Plan utilisation in thin markets
Reforms to Home and Living Policy
Perception
Nature of Staff Employment
Conclusion

About Spinal Cord Injuries Australia

Spinal Cord Injuries Australia (SCIA) thanks the Joint Standing Committee on the NDIS for the invitation to provide this submission to its inquiry into the Capability and Culture of the NDIA on behalf of the many NDIS participants with spinal cord injury and similar physical disability who use our services.

SCIA has been providing a dedicated advocacy service for people with spinal cord injuries and similar disability since 1967. We currently employ 200 staff across services nationwide including 14 staff dedicated to our Policy and Advocacy work in New South Wales. Some of our staff provide advocacy services from our regional office in Alstonville, in Northern NSW.

SCIA provides specialty knowledge in Spinal Cord Injury and similar neurological conditions, and broader knowledge and experience across physical disability. SCIA was founded by people with acquired spinal cord injury and continues to employ many people with spinal cord injury and similar physical disability. Having people with spinal cord injury and similar physical disability on our staff creates a vast knowledge base that helps us to meet the individual needs of the people who use SCIA’s services.

Introduction /Executive Summary

The implementation of the National Disability Insurance Scheme (NDIS) and individualised disability funding in Australia has certainly improved the circumstances and quality of life for many people with disability.

It’s important to remember how inflexible, underfunded, fragmented and one-sided the block funding of the pre-NDIS disability sector was. Many people were isolated without access to activities outside the home. Ageing parents had no idea who would take care of their children when they were no longer here, and respite services, if they could be found, were often inadequate and inappropriate1.

Central to the NDIS is people with disability having control of their own funding to make their own decisions. A market-based model of service delivery means that NDIS participants can take all or some of the services that providers offer based on preference, suitability, and efficiency. They are free to split their support requirements between different providers if they choose to do so2.

The principles of choice and control that underpin the NDIS are complemented by a code of conduct and quality and safeguards assurances.

Those safeguards include compulsory reporting obligations and service standards that give transparency to the activities of service providers and is meant to hold them accountable. People with disability have for too long been subjected to a system that perpetuated their vulnerability with limited protections and lacking oversight.

But while the NDIS is a significant stride in the direction of a more accessible and inclusive society, not all participants have had good experiences. Poor outcomes experienced by NDIS participants are caused by many of the same problems that have, for a long time, beset the disability sector and people with disability. They include skilled staff shortages; cost; lack of funding; discrimination; intersectionality; isolation; safety; inequality and lack of access to advocacy services.

Successful use of the system requires clarity of information; having providers who are supportive of flexibility; and participants being able to navigate the NDIS and its complexity3.

And there are different entities playing different roles throughout the scheme. For instance,

Local Area Coordinators (LACs) are the initial contact for plans;
Support Coordinators help to implement the plans and work with service providers;
and then there’s Advocacy Organisations who work with participants and families to navigate complexities and help with issues when they arise. It’s important to remember that funding for advocacy services was stripped at the inception of the NDIS which has compounded the challenge of resolving many of the issues and complexities experienced by participants and their families4. The attempt to save money by removing funding for advocacy groups has most likely been spent on appeals and mediation. Between July 2021 and January 2022 there has been a 400% surge in complaints to the Administrative Appeals Tribunal5.

While the purpose of each role within the scheme is clear and carried out with good intent for the most part, consistency in messaging and easy progression through the different stages isn’t always achieved. There have been significant problems with service inconsistency and inequities in participant outcomes since implementation. This was highlighted in the 2019 Tune Review6. It doesn’t help when clarity is sought from call centre staff who provide false or misleading information because they are unskilled or inadequately trained – a complaint from members of the SCIA community who have used NDIS call centres.

Inconsistency in plans, and planners, for people with disability with the same or similar needs

was causing distress to many people7. The inconsistencies compound the issues that some participants already have in navigating the system due to its complexity and size. It can be particularly tricky at the interface between the NDIS and other services or agencies8.

For instance, the assessment and eligibility processes for Supported Disability Accommodation (SDA) and Supported Independent Living (SIL) funding are often onerous and undertaken at the participant’s expense without any guarantee of success. The challenges that people face in finding accommodation must be dealt with across multiple agencies9. Recent research indicates that individual funding models like the NDIS can compound existing inequalities based on demographic and intersectional factors like their disability or type of disability, their age, race, gender or gender identity, sexual orientation, or socio-economic status10.

To again use housing as an example - rather than allocating accommodation vacancies to those who are most in need, people with disability who have the means to pay for their assessments are advantaged because they do not have to join the queue for community health funded assessments11.

But the inequalities don’t just apply to housing or any one type of service. If a person with disability has other marginalised identities, then the combination of the two will exacerbate the inequities they experience. If people with disability identify with more than one group – disability and Aboriginality, disability and gender or culturally and linguistically diverse (CALD) background as examples - then they will have difficulty accessing the scheme and if they are able to access the scheme they are more likely to experience a poor outcome12.

3. Recommendations

As part of as the pre-planning process for new NDIS participants, clarify and describe in accessible formats, the roles of local area coordinators, planners, support coordinators, service providers, advocacy organisations and other mainstream or community organisations.
Review the information provided to new participants that describes the NDIS eligibility and registration process and ensure all of the information is fully accessible, clear and relevant.
Resource pre-planning support to assist new participants to access the scheme and increase the number of people with disability working as local area coordinators and planners.
Develop and implement detailed guidance for planners and delegates about how to engage participants and their supporters during planning meetings
Co-design communications and engagement approaches to connect with people with disability
Provide ongoing training to local area coordinators and planners to increase their knowledge of the scheme and the availability of services.
Funding to improve workforce training and development to:
Develop the skill level of NDIS staff
Develop nationally consistent information resources to ensure information is disseminated consistently and accurately.
Establish a national workforce plan to employ more people with disability in customer service roles.
Support establishment of disability advocacy communities of practice
Training/qualifications for people with disability to be accredited local area coordinators and planners.
Greater flexibility to plan lengths to ensure they meet the individual needs of each participant. That includes shorter duration plans if requested and more frequent engagement for people with episodic, fluctuating, and deteriorating conditions.
Review plans for participants impacted by emergencies and disasters and make revisions or provide flexibility if required.
Provide information on accessing disability advocacy services for participants where they are experiencing difficulties with the NDIS, Including during the planning process.
Ensure that plans for participants in regional and remote communities, Aboriginal and Torres Strait Islander participants and culturally and linguistically diverse participants include funding for services that are available and accessible to reduce the risk of underutilisation.
Increase knowledge and access to assistive technology (AT) particularly smart home technology.

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In SDA and SIL funded group homes, gradually phase out the practice of service provider delivering tenancy and other additional supports.
That time be afforded consultation with experts in the planning process for home and living supports and all supports that require consultation with professionals.
Improve the ability of NDIS accommodation packages to provide a more flexible approach that more adequately meets the housing needs of people with high and complex needs.
Introduce a transitional housing fund that can quickly meet immediate needs of complex cohorts and people in crisis. This includes available and flexible funding for participants in transitional housing.
Implement a flexible pricing structure that can attract highly skilled staff for participants with high and complex needs.
Strengthen the interface of the NDIS and mainstream services so that people with disability are not spending inordinate amounts of time waiting to be transitioned from hospital or other health services.

4. How inequality is impacting service access and delivery

The 37% NDIS participation rate of females demonstrates a glaring disparity when compared to Australian Bureau of Statistics (ABS) data which indicates that women and girls are 49% of all people with disability. There are reasons given for the disparity – females are underdiagnosed or underrepresented in certain types of disability including autism spectrum disorder (although recent research challenges this theory) and they are more likely to be diagnosed with disabilities like some autoimmune diseases that are difficult to get funding for. The low participation rate of females is reason for concern13, especially as females with disability are one of the poorest of all the groups in our society14.

Inequities and service gaps are more prevalent in low-income families, particularly single parent families, than families with more resources. And it’s not because high income families can purchase services or supports with their own money. In fact, high or higher-income families are not only less likely to go without supports but they are also less likely to be significantly out of pocket and they are less likely to run out of funding altogether15.

Aboriginal and Torres Strait Islander culturally and linguistically diverse (CALD) participants are significantly underrepresented as NDIS participants. Currently 6.9% of NDIS participants are Aboriginal and Torres Strait Islander peoples (32,396 active participants as of 30 June 2021) which is considerably less than the 60,000 Aboriginal and Torres Strait Islander people believed to have a significant disability16.

And as of June 30, 2019, people from culturally and linguistically diverse (CALD) backgrounds are just 8.4% of NDIS participants17, less than half the National Disability Insurance Agency’s (NDIA) own goal of 20% representation of CALD participants18.

5. The need for Assistive Technology

There is sufficient evidence to suggest that assistive technology (AT) is the catalyst for increased independence and engagement, confidence, participation, autonomy, and less reliance on carers19. Yet, despite the benefits associated with AT it only represents about five percent of NDIS funding and the lack of investigation into technology like smart home AT means people with disability may be missing out on the inherent benefits of digital and technological progress20.

Additional research shows that if the NDIA changed its attitude and culture towards the use of AT, plan utilisation for ‘assistance with daily life’ could be increased and funding for ‘core daily activities’ could potentially be reduced 21.

Research into the inequities in plan size and spending by NDIS participants in Victoria suggest that participants who spend 80% of their funded AT within a year appear to have a larger plan allocation for ‘assistance with daily life’ in their subsequent plan. While the researchers suggest some degree of caution should be taken in interpreting that particular outcome22, it does corroborate other research which should be sufficient reason for the NDIA to address the way it prescribes and approves the use of AT23.

Conversely, delays in access to equipment and home modifications is a problem for participants with high support needs particularly in locations where services are scarce. Delays can lead to deteriorations in functioning and independence, which contributes to an underutilisation of plans.

The process doesn’t help. Obtaining approval for AT is time consuming. Supporting documentation from occupational therapists is often required and there may be a need for customisation or trialling of the technology and then further consultations with an occupational therapist24.

Reforms to the Planning process

Learning how to navigate the NDIS and how to access services continues to be difficult for people with disability. They are the very people that the scheme is designed to support but without family, friends, health professionals or advocates to assist them, people with disability may not have the goal-oriented language required to articulate what is needed, or they may not sufficiently understand the terminology to interpret what is being offered. That 18 percent of participants don’t know what they are supposed to do after they have completed the planning process says a lot about how much participants understand about purchasing services and supports.

Resources and frameworks to assist people with supported decision making for people with disability is absent so advocacy groups like SCIA are regularly asked to support participants to access and navigate through the eligibility, pre-planning, implementation, and plan review stages.

The risk in the planning process is that participants goals will be conflated with plans given to other participants with a similar disability without considering the specific circumstances of a participant’s life, circumstances, or their goals and aspirations.

There needs to be a framework for meetings and consultations with family, where applicable, and experts. For high cost supports like Supported Disability Accommodation (SDA), home modifications and some AT, without access to expert advice the outcomes can be fraught.The current attitude and culture around planning just leads to more reviews and appeals

Plan utilisation in thin markets

A study conducted by the Melbourne Disability Institute into the size and utilisation of plans by Aboriginal and Torres Strait Islander and CALD participants in Victoria showed that on average, plans for Aboriginal and Torres Strait Islander and CALD participants were larger than the plans for non-Aboriginal and Torres Strait Islander participants and CALD participants.

As of September 2022, there were 3,991 outstanding NDIS administrative appeals tribunal cases28. Appeals are costly, stressful for participants and can be very lengthy to get outcomes.

The planning process – now referred to as a plan reassessment – is very onerous. Participants don’t always feel that the planner or LAC is understanding their needs. And these planning discussions can often feel adversarial and not supportive. Participants can feel as though they are being talked down to, rebutted or denied when discussing the different aspects of the plan.

SCIA welcomes the proposal to introduce longer plans. Up to five years where appropriate will give many participants more certainty and comfort. Of course, caveats should accompany longer plans. Regular check-in options should be given to people who have episodic or deteriorating conditions and there should always be the consideration that people may not have fully comprehended the longer-term implications of their plan or their circumstances may have changed unexpectedly. We have just experienced a pandemic and numerous natural disaster; these were all unexpected and impactful especially to people with disability29.

We have already identified the risks associated with funding services to people in locations where those services are not available30. It leads to plans being underutilised and people disengaging from the scheme. Many people, especially people who are experiencing isolation and financial hardship feel alone and confused after receiving their plans. Only 41% of participants receive funding for Support Coordination. Support Coordination could play a larger role in helping participants navigate the complexities and find suitable supports and services. This is especially relevant for people with complex needs, higher value supports like SDA and AT, and participants in thin markets31.

But despite having larger plans and more money available to them, their plans were considerably underutilised because both groups either struggle to navigate the complexity of the system or due to the scarcity of culturally appropriate services or a lack of services due to the rurality or remotenessredacted

To further demonstrate that plan size does not determine spending and plan utilisation, participants in regional and remote Victoria receive smaller plans compared to city-based participants but still, on average, spend less.

Where risks of underutilisation are evident it may be necessary for the NDIA to reconsider their attitude and formula for plans and the allocation of funding. Higher plans do not translate to higher spending although higher funding should be granted if it will alleviate some of the problems caused by remoteness or for other appropriate reasons. Support for participants in regional and remote areas needs to be directed at planning for the unique circumstances of thin markets and to reduce the inequities and disadvantages they experience because of where they are located.

In the case of participants in regional and remote communities which will include a high proportion of Aboriginal and Torres Strait Islander participants, more consideration should be given to tailoring plans to the limitations caused by rurality and remoteness, and the availability of the services that are being fundedredacted

In the case of Aboriginal and Torres Strait Islander and CALD participants, consideration should also be given to providing information about culturally appropriate services and addressing some of the obstacles they face which include limited trust and fearredacted. Many Aboriginal and Torres Strait Islander and CALD participants feel alone and confused after receiving their plans. They struggle with the concept of choosing their own supports which immediately causes anxiety because they have to discern and identify services that are culturally appropriateredacted.

32 The NDIS in Victoria. Are there inequities in participants’ plan size and spending? Quantitative Report Melbourne Disability Institute August 2021 pp2-5 33 Ibid pp56-58 34 Ibid p8 35 Victorian Council of Social Services (VCOSS) VCOSS response to NDIA consultation paper: Clarify and resource plan implementation roles

8. Reforms to Home and Living Policy

The problems with affordable and accessible housing are so intrenched that there needs to be a complete cultural, attitudinal, structural, and funding overhaul to protect people with disability from violence, abuse, neglect, and exploitation and to achieve outcomes that will quarantine our most vulnerable citizens from the threat of homelessness36.

The NDIS is not adequately protecting people with disability from the threat of homelessness. The intent of SDA funding was to meet the housing needs of people with disability who were eligible for support (6% as of 2020). But those people with disability who are most in need are the participants who are missing out. Homelessness, by definition, is an outcome where a person does not have access to suitable housing37.

Many people in group homes or congregational settings have little or no choice over who they live with or the workers who provide their supports. And the supports they receive are often provided out of commonality and for the convenience of the provider over individual choice. Participants in these settings dare not complain out of fear of losing their place in a precarious accessible and affordable social housing market38.

With such little choice and control over their lifestyle and living circumstances, it is hard to argue that people with disability are not on the housing continuum towards homelessness39.

The risk of violence, abuse, neglect, and exploitation is heightened in group homes where the same provider is responsible for tenancy and supports. This practice is reflective of older models of disability support and runs contrary to the principles of the NDIS – particularly the principles of choice and control40.

The risks associated with allowing the same service provider to be responsible for tenancy and the delivery of other services has been addressed in evidence provided to the Disability Royal Commission and by the Joint Standing Committee on the National Disability Insurance Scheme: Report into Supported Independent Living.

The committee said: “Allowing a single entity to exercise control over both tenancy and service delivery may have significant negative impacts for participants, including reductions”

Perception

There has been a perception in recent years that the NDIS is constantly looking for opportunities to make cuts to services and funding; or overhauling the NDIS Act to make way for the introduction of independent assessments; or that some disabilities may be excluded from funding into the future. When participants are constantly hearing that the agency is focused on sustainability and operating guidelines to ensure appropriate operation of the scheme, they fear that the NDIS that they fought for might be under attack42.

The price freeze on support coordination and plan management in particular – although therapy services are also subject to a price freeze – has seriously impacted participants, support coordinator providers and their staff. More than 250 providers have left the sector43

Nature of staff employment

It’s widely reported that an estimated 83,000 extra workers would be needed to fill the gaps in the system by 2024 as the rollout of the NDIS continues and more participants look to access the scheme.

But it remains unclear just where those workers will come from. The Covid- 19 pandemic has meant that the overseas workforce that we depend on in the disability sector is no longer available to us and there is the perpetual issue of low wages and limited career progression that discourages potential workers. Add to that the high casualisation of the workforce and that workers are shared across both the disability and aged cares sectors and the prospect of finding enough workers with the flexibility and sufficient skills to support people with complex and high support needs becomes extremely challenging45.

A report by superannuation group Hesta on the disability workforce said that one in six disability support workers will leave the sector within the next two years. Of workers between the ages of 18 and 39, one third will leave and not return to the sector. Considering 15% of shifts are currently vacant and there is sure to be an influx of new participants entering the sector and needing support, it’s hard to imagine where those workers will come from46.

It is worth considering targeted skilled immigration programs to fill our skill and workforce shortages, particularly for regional and rural communities. And the sector cannot continue to ignore the poor pay compared to other industries and sectors. There should be greater recognition for formal training, education and lived experience47.

These circumstances of a shortage of disability workers makes this a highly challenging environment for participants. Anecdotally we know people are struggling to gain support workers to cover all their needs. Service providers themselves have struggled with this and participants are missing out as a result where shifts are unable to be filled. This explains why new online platforms that match people with support workers are being utilised to try to fill support that traditional service providers have been unable to cover.

Conclusion

The human rights of people with disability are central to the function and efficiency of the NDIS. The move towards a market driven model doesn’t override the need for money to be spent prudently and the administration of the scheme to be efficient and equitable. Participants and other stakeholders are supportive of a well administered public service.

But the brunt of responsibility for inefficiencies and challenges in the scheme appears to be borne by people with disability through price freezes and constant talk of sustainability. This only serves to increase mistrust and insecurity in the Scheme’s participants48.

The pain points commence from the pre-planning phase and are often exacerbated by inaccuracies and inconsistencies, lack of consultation and poorly trained and uninformed staff.

It is waste and inefficiency in the system that threatens the sustainability of the NDIS, not the scheme’s participants. SCIA welcomes the commitment from Minister Shorten to put an end to the administrative inefficiencies and the culture of arbitrary cost-cutting.

redacted: s22(1)(a)(ii) - irrelevant material

Impact of NDIS on individuals with spinal cord injuries