Multiple Sclerosis Australia

Submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS)

Inquiry into the Future of the NDIS: Scheme Implementation and Forecasting for the NDIS

Date: 29 October 2021

Recipient: Rohan Greenland Chief Executive Officer

Address: MS Australia Level 19, Northpoint Building, 100 Miller Street North Sydney, NSW 2060

Website: www.msaustralia.org.au ABN: 51 008 515 508

Introduction

MS Australia (MSA) is pleased to provide a first submission to the Joint Standing Committee on the National Disability Insurance Scheme’s (NDIS) inquiry into the future of the NDIS.

The focus of the comments provided in this submission are on key areas that will impact on people affected by multiple sclerosis (MS) and other neurological conditions for which our state organisations provide services and support. Included are comments provided by representatives of our state organisations and, in some instances, directly from people living with MS. MS Australia’s role is to work on behalf of our state and territory-based member organisations to provide a voice for people living with MS across the country.

MS Australia’s member organisations are:

MSWA (providing services and support in Western Australia)
MS SA/NT (providing services and support in South Australia and the Northern Territory)
MS QLD (providing services and support in Queensland)
MSL (Multiple Sclerosis Limited providing services and support in Victoria, NSW, ACT and Tasmania)

Each of these state-based organisations operates independently to provide a range of services and advice to people living with MS regardless of age, and, in some cases, to a broader group of people with other progressive neurological diseases. These services vary from state to state and include: phone information support and advice, online resources, MS clinics, specialist MS nursing, physiotherapy, allied health services, education and information workshops, seminars and webinars, psychology, financial support, supported accommodation, residential and in home respite, peer support co-ordination and employment services.

MS Australia is providing this initial shorter submission against the terms of reference to hopefully assist with the Committee’s deliberations and for consideration for an interim report. We will provide a more fulsome submission including additional details on each of these matters and recommendations for the final submission closing date on 28 February 2022.

Who’s in and who’s out?

The main objective of the NDIS is to provide all Australians who acquire a permanent disability which substantially impacts how they manage everyday activities, with the reasonable and necessary supports they need to live ’an ordinary life’1. This however covers only about 466,619 Australians2, out of a total of 4.4 million (or one in six)

Australians) that live with disabilities in Australia*. Roughly a third of this cohort lives

with what is termed ‘severe disability’ that requires assistance to participate fully in everyday life, including property maintenance, cognitive or emotional tasks, household chores, mobility and transport*. The majority of this cohort only have recourse to services outside the NDIS.

The Disability Discrimination Act 1992 (Cth)? defines disability as:

total or partial loss of the person’s bodily or mental functions
total or partial loss of a part of the body
the presence in the body of organisms causing disease or illness
the malfunction, malformation or disfigurement of a part of the person’s body

a disorder or malfunction that results in the person learning differently from a person without the disorder or malfunction

a disorder, illness or disease that affects a person’s thought processes, perception of reality, emotions or judgment, or that results in disturbed behaviour.

This definition does not discriminate against age. According to a People with Disability Australia report (2020), half (50%) of people aged 65 and over live with a disability. About 15% of males and 20% of females aged 65 years and over have severe or profound disability. The current NDIS legislation does discriminate against those who acquired a disability and are over the age of 65.

Figure 1

have a disability or long-term health condition

50% Over 80% of people over e « of people over the age of 65 have at one long: Only 10% of peaple with a disability are eligible for the National Disability Insurance Scheme (NDIS)

Graphic: Assistive Technology for All Alliance (https://assistivetechforall.org.au/)

3 https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability

hitps://www.aihw.gov.au/getmedia/ee5ee3c2-152d-4b5f-9901-71d483b4 7f03/aihw-dis- 72.pdf.aspx?inline=true

https://www_legislation.gov.au/Details/C2016C00763

® https://www.aihw.gov.au/getmedia/ee5ee3c2-152d-4b5f-9901-71d483b4 7f03/aihw-dis- 72.pdf.aspx ?inline=true

People With Disability

People with disability are a very diverse cohort – representing all demographic and socio-economic groups, age and gender. They interact with all aspects of Australian life, across the spectrum of policy and program areas of health, education, employment, housing, social services, justice and community supports.

What about MS and other neurological conditions?

MS is the leading cause of disability in young adults. There are over 25,600 people living with MS in Australia. Most people are diagnosed with MS between the ages of 20-40, but it can affect younger and older people too. Roughly three times as many women have MS as men. Often a diagnosis of MS occurs when people are fully employed, planning a family and making significant career choices.

MS, along with a number of other conditions, is often referred to as a neurological condition. The Department of Health website7 refers to neurological conditions as chronic conditions, noting that there are over 600 diseases of the nervous system. According to a report noted in the Productivity Commission website8, the ‘total prevalence for neurological disorders in 2017 accounted for 10.6 million people or 43 per cent of Australian population’. The NDIA’s own data9 indicates that, there were 14,389 of 449,998 total scheme participants with a primary neurodegenerative condition10 in the NDIS, making up 3.2% of all Scheme participants with an approved plan (as of 31 March 2021).

Congenital vs acquired disability

There are distinct differences in the concept of disability between those with an acquired and those with congenital disability. For many, the idea of accessing the Scheme and identifying with the fact that they might have a disability and not just a chronic illness, coincides with a public acknowledgement of the functional impacts that MS has on their lives. It is an acknowledgment that they might not be as independent as they once were; a realisation that they have to seek support to maintain or hang on to the “ordinary life” that they have had to date.

This is a crucial difference to acknowledge. People affected by MS and other neurological conditions have previously had choice and control. They had a sense of belonging, safety and security. They had opportunities and were making valuable contributions to society, but the symptoms associated with their experience of MS have caused their own barriers and functional impairments. Most people affected by MS and other neurological conditions will have already utilised informal supports – often exhausting these – before considering access to the NDIS.

Participants with a closer connection to the disability community note that there is a distinct difference in how people react to and perceive visible/obvious disabilities (often those living with physical disabilities) and invisible/nonobvious disabilities (particularly relevant for those living with MS or other neurological diseases).

The Concept of an Insurance Scheme and Early Intervention

The partitioning of eligibility to the scheme excludes those living with disability or functional impairments that are not deemed as ‘substantial impacts’ by NDIA decision-makers. This is no doubt bolstered by the current reform agenda of ‘reigning in the spending’ which saw the proposal of Independent Assessments as an attempt to ration the supports in personalised budgets.

People with MS who are newly diagnosed with active disease or those who might have episodic disabilities as a result of an exacerbation or relapse might experience very confronting symptoms such as sight impairment, changes in cognition, changes in mobility or severe pain, sensory changes or spasms outside their control that are often totally disabling and definitely impairing their functioning and ability to perform daily living tasks.

MS is episodic for some, and these symptoms, for some after a few weeks, for others after months, partially or fully repair. During these periods of active disease, people with MS often only have recourse to informal supports, if available, and their healthcare team to assist them.

The NDIA Operating Guidelines state that ’the intention of early intervention is to alleviate the impact of a person’s impairment upon their functional capacity by providing support at the earliest possible stage. Early intervention support is also intended to benefit a person by reducing their future needs for supports.’11 A streamlined process for determining the early intervention requirements for children exists, but not for adults (who do not appear to be the focus of the operationalisation of this legislative provision).

The onus is on the prospective participant to provide sufficient evidence to the NDIA, proving that early intervention support is most appropriately funded through the NDIA and not another general system, body or agency.

As a result of this partitioning, people who live with disability or chronic health conditions, who may benefit from early intervention, are missing out.

The Early intervention pathway is an important access route for relevant and pivotal supports, particularly when a person is on the trajectory to, but does not yet meet, the ‘substantially reduced functional capacity’ criteria. For incurable conditions like MS, with fluctuating functional impacts, and certainly with a trajectory to meet the Scheme’s full access criteria within the lifetime of the participant, it is critical to have a streamlined access pathway to the Scheme prior to the substantially reduced functional impact, of which Early Intervention is the most appropriate access point. Consideration should be given to automation of access to the NDIS for people with MS and other neurological conditions. This will also assist with the other caveats which underpin the intention of Early Intervention – that is, to mitigate or alleviate, prevent deterioration, or improve functional capacity.

Barriers to accessing services outside the NDIS

People with disabilities outside the NDIS face daily challenges in fully participating in everyday activities as a result of their different disability types or severity, the availability of appropriate services, community attitudes, stigma and discrimination.

A recent survey with people living and those affected by MS, conducted by KPMG in 2019 on behalf of the MS member organisations delivering services throughout Australia, found that affordability was identified as a key barrier to receiving supports. Other barriers included lack of awareness, geographical location and eligibility. Affordability was listed as a barrier by over half of those living with MS under age 35 years and those living in lower income households. Eleven percent indicated that transport was a barrier to access services and supports.

One in six people with a disability live in poverty according to an ACOSS/UNSW report in 201812. These numbers are likely to be under-estimations as the report did not adjust for additional costs resulting from living with a disability day to day i.e. modifications at home, personal support and care, medical and pharmaceutical expenses and additional transport costs.

The idea of an ordinary life as a concept that is defined by the NDIS’ Independent Advisory Council (IAC) as ‘a life where people with disabilities have the same opportunities as people without disabilities.’ Outside the NDIS, this ordinary life is costed at $967.50 a fortnight (DSP maximum individual payment)14. An average NDIS package or personalised budget (March 2020) sits at $67,00015 per annum or $2,576.92 a fortnight.

Although there are safety nets, such as the Disability Support Pension (DSP), and some people living with disability do maintain some level of employment, “people with disability generally have a lower level of personal income than people without disability. Having a person with disability living in the household is also associated with lower levels of household income.” They are also more likely to experience poor health, discrimination and violence than those without disability.

DSP levels are not adequate for those eligible and successful in claiming DSP. In 2017, The societal and individual burden of disease for MS, in comparison to other disease and disability types are high. For those lucky enough to qualify for DSP, feedback from the MS community is clear that the support does not meet the day to day living expenses for someone living with ill health,a chronic condition or a disability associated with MS. More worrying, those unable to meet the eligibility criteria of DSP have to survive on other benefit types which have already been criticised broadly for being inadequate for those living with full health.

Page 7

MS Australia, with a number of other peak bodies, believes that the DSP, in its current state, is not meeting its purpose in supporting people with a disability, their family and carers, to live independently, safely and have equal access and rights to participate in the community.

Housing and Disability outside the NDS

People with disabilities in Australia remain challenged by the lack of availability of appropriate accessible housing. Problems with existing housing stock are multiple and especially problematic for those renting from a landlord.

This remains a huge issue for people living with disabilities and particularly those living with MS – including those who live with a disability as a result of their MS aged over 65 years. Modifications and adaption costs are often substantial and out of reach for most.

A systematic policy approach is needed to address this problem. The consequence of not having accessible or appropriate housing reduces overall quality of life and leads to an increased risk of injury, hospitalisation and the need for specialist disability supports through the NDIS.

Need for service coordination and ‘system wrangling’ outside the NDIS

People outside the boundaries and eligibility of the NDIS, especially those living with fluctuating or episodic disability or chronic health conditions not deemed as permanent disability, are missing out.

Those living with neurological conditions or those living with mental health issues and illness are experiencing gaps in services delivery, access and continuity of care.

Prior to the NDIS, disease specific organisations were able to advocate and provide specialist service coordination to this cohort, providing that much needed ‘system wrangling’, that is, providing support and capacity building activities to link people to appropriate supports that may prevent the need for what was then called specialist disability supports. This support is now funded only for those accessing these supports through their NDIS personal budgets. Although MS Australia’s member organisations and other disease specific peak bodies and organisations have chosen to continue providing service coordination to those outside the NDIS (and often topping up services coordination support for those already in the NDIS due to insufficient budgets for this support type), these instances of support coordination are now funded through highly competitive and dwindling fundraising income.

Now called Information, Linkage and Capacity Building (ILC), the previous recurring funding to such organisations is pooled in a national grant round.

Information, Linkage and Capacity Building

According to the strategic framework for the ILC, the:

‘ILC is an important part of the NDS because it can enable greater access to the social and economic life of the community for people with disability, their families and carers. People with disability engage both directly and indirectly with a range of informal and formal supports and resources over their lifetime, to help them with

Examples of these include age, location, socioeconomic and cultural background, type and nature of a person’s disability and level of functional impairment, the cyclical or episodic nature of disability, and importantly the capacity of the community and mainstream services to proactively respond to diversity and reduce the impact of disability.’

Although well-meaning, these competitive grant rounds provide one off funding for projects aiming ‘to build the knowledge, skills and confidence of people with disability, and improve their access to community and mainstream services’ but with little continuity, sustainability or strategic intent or linkage with measurement of the overall benefits or the identification of gaps in the market or individual quality of life indicators.

The ILC program was recently transferred to the Department of Social Services to sit next to other government programs such as the Disability and Carer gateways. This move is concerning, as it creates a clear bureaucratic partition and signalling to the community - between the “haves” and the “have nots”.

The ILC requires a fresh approach. Consideration should be given to utilising a research approach, looking back at what the ILC program has achieved before looking forward to an informed, evidence-based decision-making process about the future of the ILC. Complimentary to this suggested research project, consideration should also be given to a qualitative research approach that may include interviews through considered community consultations to fully explore the unintended consequences, benefits and gaps since its implementation. In the spirit of capacity building, a consumer informed approach to re-design should be adopted.

In addition, might be interesting to do these consultations with the organisations that previously were in receipt of Tier 2 recurrent funding and their cohorts to see what has improved, what has been lost, and how things might be able to improve in future.

The interfaces of NDIS service provision with other non-NDIS services

Health and the NDIS

This barrier or area of demarcation between the NDIS and other community or government services such as health, illuminates the regional differences, accessibility issues and availability of specialist disability supports outside the NDIS, and places the onus on the person living with MS to navigate these intersections.

The health system itself is a multifaceted web of ‘arrangements, which are mixture of public and private funding involving blurred lines of jurisdictional responsibility, multiple providers and a variety of regulatory regimes, are ‘nothing short of complex’’. For people living with MS, these intersections can become very problematic, complex, and hard to navigate.

Page 9

MS specialist health professionals are central to the service and support needs of people living with MS, as many of the service needs relate to ongoing management of the condition. However, the role of these professionals is targeted and therefore may not consider other holistic needs.

Episodic and degenerative conditions, including chronic health conditions, require differences in service utilisation and the need for disease specific specialisation for optimal outcomes. Health and disability-related systems require flexibility and responsiveness - they must not add stress through administrative complexity. This lack of clarity and understanding is not only limited to the person living with MS, but also to their family and informal supports. Without articulated health pathways for specific disease groups, any formal supports within both sectors and mainstream services struggle to navigate these systems.

Aged Care and the NDIS

Another deliberate fiscal boundary of the Scheme is the discrimination against those who acquire a permanent disability, which substantially impacts how they manage everyday activities but who are over the age of 65. For this cohort, supports are available only if self-funded or through the aged care sector, which is capped and means tested. This discrimination based on age is unacceptable and unfair.

Currently there is inequity in Government support of people living with MS diagnosed with MS and other neurological diseases under the age of 65 and those over the age of 65 years. The NDIS will provide access to specialised disability supports for eligible participants up to their 64th birthday at time of application, but for those aged 65 and over, they must rely on the aged care system (via the My Aged Care portal) which is designed to address ageing, not disability. This inequity is further illustrated by the Disability Doesn’t Discriminate campaign, initiated by Spinal Life Australia.19

People affected by MS or another neurological conditions, aged over 65, with a disability, should be able to access whichever support system best meets their needs i.e. the National Disability Insurance Scheme (NDIS) or My Aged Care.

Integration between the aged care, health care and disability care systems are urgently required and the implementation of the recommendations of the Aged Care Royal Commission may go some way to addressing these inequities.

The introduction of policies to bring about mandated integration between the aged care, health care and disability care systems will ensure people affected by MS have their needs met, regardless of which system they access. This approach will also bring about efficiencies in the NDIS, through the streamlining of services and support.

The drivers of inequity

The scheme’s initial regional roll out arrangements (in ‘waves’) during the transition from state to a national approach and the variations in priority between states and territories made the drivers of inequity apparent from the onset. Some potential participants missed out due to age-based rollouts, based only their dates of birth.20 Others missed out due to the lack of availability of supports i.e. inability to access

Variations in Plans

The national participation rate for participants with a neurodegenerative condition is relatively low compared to other disabilities. For those with a neurodegenerative condition except for Parkinson’s disease, the number of active participants with an approved plan continues to increase at a decreasing rate compared to the Scheme as a whole.

This might be because participants with a neurodegenerative condition have significantly higher average annualised committed supports compared with the Scheme overall ($70,000) - $108,000 for participants with MS.

A recent CSIRO publication in Australian Health Review entitled, “Do people with multiple sclerosis receive appropriate support from the National Disability Insurance Scheme matching their level of disability? A description of disease burden and societal costs in people with multiple sclerosis in Australia (BAC-MS)”, published in September 2021 is the first paper in Australia that correlates disability with the approved package value. The study has found ‘striking variability in packages approved’ citing restricted mobility as the main driver or decision-making factor. This appears to be consistent

Page 11

with the idea that visible disability is more easily understood than invisible disability or functional impairments such as cognition decline.

Eligibility for the Scheme places the burden of proof, to evidence functional impairments, at the feet of applicants. For those who do not associate a diagnosis such as MS with the concept of ‘disability‘ but rather a disease, the jump to making an application to the Scheme, heavily relies on their understanding of the purpose of the Scheme and their ability to reflect on the day to day functional impairments caused by the interaction of the various symptoms associated with MS.

Dealing with the NDIA is also thought by many in the MS community to be akin to dealing with any other government agency, triggering a great amount of anxiety and distrust. For example, even with sufficient health assessments and reports, specialist health opinion is not always taken into account or respected.

The overriding factor or perception for many participants is a feeling that agency staff have been directed to achieve cost savings and to reign in spending.

Anecdotal evidence from our state member organisations confirms that plans for those living with neurological conditions are scrutinised for possible savings, especially for reductions in Support Coordination budgets. Case studies will be provided in our full submission in February 2022.

The Sustainability of the Scheme

A deep understanding is required to contemplate the interaction of socio-economic impacts and the costs of disability on the individual and society as a whole.

The economic imperative to ‘soften up the public’ through alarmist reports projecting billions in scheme overspending and funding gaps, has started the paradigm that the scheme is unsustainable. The original intent of the Scheme has been overshadowed in the public conversation with a focus on funding and expenditure rather than outcomes and benefits. The Productivity Commission report referred to a cost-benefit test stating that the “benefits of the scheme would outweigh the costs”.

MS Australia believes that the most important measure to address inequitable variation in plan funding would be to commission an economic impact study costing the savings and benefits of linking people with disability to appropriate supports, disability prevention measures and even Quality of Life measures tied to social and economic participation. Such a study could do much to challenge any community attitudes that people with disabilities are a drain on society.

The results from a recent ABC national survey, Australia Talks showed that 82% of all Australians think we should spend as much as is necessary to ensure people with disabilities have the same opportunities as everyone else. The same survey (representing a majority of our voting population) stated that Australians did not believe that it is unsustainable to spend money to improve the lives of people with a disability.

Improved transparency and access to costing information including costed outcomes of factors such as keeping people with disability in employment and supporting people

Page 12

with disability to remain active in the community would benefit from a more balanced conversation.

The importance of evidence based decision making and optimal utilisation of the Disability Policy and Research Working Group could be utilised – selecting research projects that could provide the evidence of this expenditure against the economic and social benefits through the NDIS, ILC Grants and other disability supports such as the DSP.

The Australian Federation of Disability Organisations in a 2019 Pre-Budget submission state, “The NDIS is the greatest social reform of our time and, as such, it is critical that it is fully funded at the required level for the longer term. An indication that funding is outlined in forward estimates provides no certainty for people with disability, their families, or for any Australian who may acquire a disability in the future. As an insurance scheme it is counterintuitive that the NDIS remains the subject of annual reviews of funding at every Federal Budget. Other levels of government are also co-contributors to the scheme and this also needs to be addressed to ensure that full contributions continue to be made to the required levels. AFDO calls for the funding of the NDIS to be legislated so that future governments have this as a key component enshrined in every budget. The agreements with other levels of government must likewise protect the full amounts required for the scheme’s operation. This would provide the certainty that people with disability, their families, supporters and the wider Australian public require.”[28]

MS Australia supports this recommendation. We also suggest establishing an independent pricing reference group and an independent pricing commissioner to advise the NDIA board on their annual risk appetite, market development and cost projections.

Additionally, the Scheme’s sustainability will only be resolved through leadership. Abandoning measures such as the Medicare Levy increase and the NDIS Savings Fund and repurposing these funds for drought relief demonstrates that the importance of funding sustainability for the Scheme has never really been a serious priority.

MS Australia also suggests that funding arrangements be reviewed as part of the Australian Productivity Commission’s schedule of work for 2023.

Conclusion

MS Australia is pleased to provide this first submission to the Joint Standing Committee on the NDIS inquiry into the future of the NDIS to hopefully assist with the Committee’s initial deliberations and for consideration for an interim report. We will provide a more fulsome submission including additional detail on each of these matters including examples and case studies and recommendations for the final submission closing date on 28 February 2022.