Submission 89 — MS Australia — NDIS participant experience in rural, regional and remote Australia | External submission

RESEARCH

ADVOCACY

CURE

AUSTRALIA

NDIS participant experience in rural, regional and remote

Australia

Joint Standing Committee on the

National Disability Insurance Scheme

March 2024

3 submission

RESEARCH

ADVOCACY

CURE

AUSTRALIA

NDIS participant experience in rural, regional and remote Australia

Associate Professor Des Graham

President

Rohan Greenland

Chief Executive Officer

MS Australia is Australia’s national multiple sclerosis (MS) not-for-profit organisation that empowers researchers to identify ways to treat, prevent and cure MS, seeks sustained and systemic policy change via advocacy, and acts as the national champion for Australia’s community of people affected by MS.

MS Australia represents and collaborates with its state and territory MS Member Organisations, people with MS, their carers, families and friends and various national and international bodies to:

Fund, coordinate, educate and advocate for MS research as part of the worldwide effort to solve MS
Provide the latest evidence-based information and resources
Help meet the needs of people affected by MS. Multiple Sclerosis (MS) is the most acquired neurological disease in younger adults around the world with over 2.8 million people affected. More than 33,300 Australians live with MS and over 7.6 million Australians know someone or have a loved one with this potentially debilitating disease.

Symptoms vary between people and can come and go; they can include severe pain, walking difficulties, debilitating fatigue, partial blindness and thinking and memory problems. For some, MS is characterised by periods of relapse and remission, while for others it has a progressive pattern of disability. MS robs many people of quality of life, primarily driven by the impact of MS on pain, independent living, mental health, and relationships.

2 NDIS participant experience in rural, regional and remote Australia

NDIS participant experience in rural, regional and remote

Australia

MS Australia welcomes the opportunity to make a submission to the Joint Standing Committee on the National Disability Insurance Scheme Inquiry into NDIS participant experience in rural, regional and remote Australia.

MS Australia has drafted a range of submissions relating to the NDIS, including four submissions to the NDIS Review:

Submission to the NDIS Review – December 2022
NDIS Quality & Safeguarding Framework – May 2023
Pricing & Payment Approaches in the NDIS Market – July 2023
What we have heard report – submission on solutions – August 2023 This submission draws on the experiences and expertise of MS Australia’s Lived Experience Expert Panel (LEEP), a diverse group of people across Australia who either live with MS or are a carer for someone living with MS, to ensure that lived experience formed the basis for this submission. Members of the LEEP provided extensive feedback on NDIS participant experience in rural, regional and remote Australia. Consultation for this submission also included MS Australia’s state and territory Member Organisations. These Members Organisations are registered NDIS providers and deliver a range of supports and services to people living with MS including support coordination, plan management, allied health, accommodation, respite, social support and in-home care.

There are currently 33,300 people living with MS in Australia and as of 31 December 2023 there were 10,728 people living with MS who have an approved NDIS plan1.The challenges faced by participants accessing the NDIS are further intensified for people residing in rural, regional, and remote areas, where they face the additional hurdles of limited or non-existent options for service providers, extensive wait times, inadequate funding for travel, and a heavy reliance on telehealth services, contingent upon reliable internet connectivity and technological proficiency. In certain instances, accessing vital services may necessitate relocation, separating participants from their homes, loved ones, and community support networks.

MS Australia appreciates the sector consultation on this issue and hopes that the Inquiry will improve the experience of the NDIS for people with disability across Australia, including people living with MS.

MS Australia makes the following recommendations:

MS Australia Recommendations

Implementing the recommendations and actions of the NDIS Review’s “Working together to deliver the NDIS” report specifically:

o Recommendation 3: Provide a fairer and more consistent participant pathway NDIS easier.

o Recommendation 4: Support all people with disability to navigate mainstream, foundational and NDIS service systems.

o Action 13.2: The National Disability Insurance Agency should progressively roll-out provider panel arrangements for allied health supports in small and medium rural towns or where participants face persistent supply gaps.

o Recommendation 14: Improve access to supports for First National participants across Australia and for all participants in remote communities

3 NDIS participant experience in rural, regional and remote Australia

through alternative commissioning arrangements.

o Recommendation 15: Attract, retain and train a workforce that is responsive to participant needs and delivers quality supports.

o Recommendation 22: Embed a highly skilled, person-centred, disability aware culture across all disability agencies and governments.

Improved planning and assessment processes including: o Minimise reassessments where the disease course and level of functional impairment is progressive or degenerative.

o Adopt clearer and more timely communications to participants about decision-making processes, timelines and expectations.

o Improved and simplified pre-planning resources that better represent the NDIS journey.

o Examples of goals and corresponding services for a range of disability types.

o Planning meetings held over multiple sessions for people who have conditions that may increase fatigue, pain, ‘brain fog’ and memory issues, including MS.

o Best practice examples of Access Request Forms, Supporting Evidence forms and approved plans.

Resources and training for health professionals in how to support patients accessing and navigating the NDIS. Many health professional struggle to know what level of information is required by the NDIS and are overwhelmed by NDIS processes.
MS Australia recommends the NDIA: o Commit to educating and training all staff and contractors about people living with progressive generative, neurological and neuromuscular conditions such as MS.

o Establish a resource library of disability materials for use by NDIA staff that includes MS Australia resources. Prior to a planning meeting, staff would use the library to access materials relevant to the participant’s disability. MS Australia would be very willing to engage with the NDIS on any further training or education materials required for the resource library.

o Implement compulsory disability awareness training for all NDIA staff with a focus on improved communication, planning and access for people with disability.

o Increase the number of NDIA staff who have lived experience of disability.

Review of the pricing for therapy supports including: o A separately funded category for allied health travel costs including an allied health travel budget for participants.

o Removing travel caps for services provided in MMM4 & MMM5 regions and allowing the actual cost of travel to be charged.

4 NDIS participant experience in rural, regional and remote Australia

a. the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews

For many people living with MS accessing the NDIS is time consuming, complex and overwhelming. People with disability and their families need support to access the Scheme and navigate the various stages of assessment, planning and service access. Feedback from MS Australia’s LEEP members highlights how challenging and emotionally exhausting the initial application and later NDIS plan review processes can be. Combined with the social isolation and lack of access to supports that people in regional, rural, and remote areas often experience, the experience can provide significant challenges to the psychosocial health of applicants.

The following case study provides an example of a NDIS application process in rural Australia that was accessible, timely and clearly communicated. However, despite this positive experience Julie’s story highlights how she relied on family for support during the process, needed to find her own service providers in rural Queensland or plan how she would travel to access supports in a metropolitan hub and was surprised by the difference in outcome between her two reviews. MS Australia is concerned that Julie’s NDIS plan funding was reduced at her last review, as for people living with MS, the progressive, degenerative nature of MS means that their support needs will not decline over time. MS Australia supports the findings of the “Working together to deliver the NDIS”: NDIS Independent Review into the National Disability Insurance Scheme Final Report noting that: ‘Assessments should be the basis of long-term plans and forward-looking, for instance, taking account of progressive conditions. They should be more flexible for participants and take account of life transitions, including finishing school, moving out of home or seeking employment’. 2

Case Study – Julie, lives in a rural town in QLD and diagnosed with MS in 2020

“The NDIS application process for myself was quite straightforward and timely. I had heard stories of other people’s difficulties with NDIS application. However, I filled out the required paperwork, my doctor signed off his section and once submitted, it was approved in the first instance within approximately 8 weeks.

This was followed up by a text and letter of acceptance. I then saw a Local Area Coordinator (LAC) to discuss the plan details in person. This appointment was very important to ensure the adequacy of the plan and supports available. I had my wife with me at this appointment to help advocate on my behalf and provide support. My diagnosis and applying to the NDIS all happened within about 6 months, so naturally I was in shock and having family support at this appointment was extremely helpful. The plan I received took into consideration my current level of ability, my informal support network, goals, and expectations for my future. I have been able to utilise my plans since to ensure that I can continue to work (part-time), raise a family, run a household, socialise and generally continue living as regular a life as possible.

The initial plan came with an email from the LAC with some suggestions on how I could use the plan, but no suggestions or leads on where to find and engage appropriate supports and services in my rural town.

My town has a local area coordinator who was very helpful at the initial stages of plan design. Any further communication or reviews have come from outside the South Burnett area, via phone call usually, as the LAC was quite backlogged for plan reviews.

Since my initial NDIS plan, I have had two reviews, both over the phone with a LAC from outside my region as the LAC from my town who was very helpful at the initial stages of plan design, was backlogged for plan reviews. Although the second review I did request to be in

5 NDIS participant experience in rural, regional and remote Australia

person, this wasn’t an option at that time due to staffing. The first phone review was very brief, and my plan was basically duplicated, the second review was quite lengthy and thorough, however this did result in less funding even though I had run out of funds in the previous plan period.

My next review will be at the end of my two-year plan period, which I really would like to be a face-to-face appointment.”

Application

MS Australia is concerned that applicants living in rural, regional and remote Australia have limited access to support in applying for the NDIS. Finding a service to support an applicant through the process is challenging for people who are new to the disability space and may be unaware that such services exist. Feedback from MS Australia’s LEEP members highlights how people living with MS frequently do not know where to start in the process and rely on peer support networks for guidance and referral to support services to assist with the application process.

In late 2016 a LEEP member successfully applied for the NDIS with support from MS Queensland and SPARK Neurocare using resources developed when Townsville was a pilot site during the implementation of the NDIS. At the pilot outset there was a lot of information available and the MS community in the regional city were well informed about the NDIS application process. This person is now a volunteer convener for a support group for young and working people living with MS in her region. She is increasingly finding that people living with MS accessing the support group have a limited understanding of the NDIS and how the Scheme is intended to support a person living with disability. There’s also a lack of understanding around how a person might describe their situation or their goals and what might be deemed reasonable and necessary. Alarmingly, a person living with MS reported to the support group that they were told point blank by NDIA staff that MS was not an eligible condition to receive NDIS funding. This misinformation actively deterred those people from applying for the NDIS.

A member of the LEEP who lives in regional NSW outlined how she feels fortunate to have been supported by MS PLUS, through their support coordination services. Her plan coordinator helped her to refine the terminology she used in her application and she feels that having the “right” words in her application helped her application gain approval in 2019. By contrast, she knows many people living with MS who applied to the NDIS without guidance or support and were unsuccessful, some have been knocked back two or three times despite more debilitating symptoms than her own.

Similarly, another member of the LEEP who lives in regional QLD outlined her concerns:

“I found communicating what MS means on a day-to-day basis through the application process was difficult. My worst day looks very different to my best day, and it’s become increasingly clear as I’ve continued in the Scheme and as I’ve watched others enter it, that if a person doesn’t describe their worst day as part of the application process, they just won’t get the supports they need - and in some cases will be rejected from the Scheme entirely.

This also applies for the support letters and reports an applicant obtains from their medical and allied health team - for example, if a letter from an Occupational Therapist only describes the person’s best day and how far they’ve come with therapy, that will not provide enough substance to demonstrate the applicant’s needs, and it seems that many health care providers are just not aware of that. Education in that space for health care professionals is critically important, I feel.

6 NDIS participant experience in rural, regional and remote Australia

To me, it seems desperately unfair when a young person with a definitive MS diagnosis and who is clearly struggling is rejected from the Scheme because their doctor, their physiotherapist etc wrote a letter which did not detail their challenges in a way the NDIA required.”

Feedback from MS Australia’s member organisations recognises that applicants living in rural, regional and remote Australia have found that the support around submitting a NDIS application has been minimal in terms of awareness of the terminology to use and collating the necessary evidence whether that be medical records or assessments. Whilst the NDIA have provided some important resources for health professionals when completing an application, unfortunately there is often a lack of detail which leads to potential rejections to the Scheme. Many applicants, when faced with a lack of understanding by NDIA staff are not confident in advocating for their needs as a person living with a fluctuating disability3. Whilst the physical implications of MS can be seen, when filling out the application it can be complicated in knowing how to fully describe the implications of the ‘invisible’ symptoms such as fatigue, memory issues and pain.

Plan design and implementation

MS is a progressive, degenerative, neurological and neuromuscular condition. As such, the Scheme’s aim of growing a person’s capacity to achieve additional capability and independence, and reduce required supports in the long term, is not necessarily realistic for all people living with MS. Feedback from MS Australia’s LEEP members highlights that their goal as NDIS participants is often to maintain capacity, but that doesn’t align with the NDIA’s core focus during planning. Additionally, each person with MS has a unique symptom set and determining disease course and prognosis is almost impossible, so trying to frame such a dynamic and unpredictable condition in the rigid framework of the NDIS presents significant challenges, both for applicants and their health care providers. One member of the LEEP stated that she found answering the questions during the initial NDIA interview difficult as the questions did not take into account the inherent nature of MS, where some days are good and others are not. She summed up her initial interview as such:

“Rating my ability to engage with the community on a yes/no basis just doesn’t work for a person with MS who can drive sometimes and sometimes not, and who is fatigued sometimes and sometimes not, and needs assistance while attending events sometimes and sometimes not.”

Plan reviews

Plan reviews can be a challenge for NDIS participants as the process often requires reports and assessments to either maintain the current level of support or increase this support. In rural, regional and remote areas due to a lack of specialised workforce and a high demand across a large geographical area, there is often a long waitlist for appointments for health professionals, in particular with the overall shortage of occupational therapists, it can be a substantial wait for these assessments. Meaning the participants are at risk of not having supporting evidence by the time the plan review is due, this situation only escalates if the participant needs an urgent plan review.

. Case Study – Kate, Townsville QLD

“In my experience, it’s been hard to find Local Area Coordinators (LACs) in my region who know about MS and the unpredictable nature of the condition in order to facilitate quality plan reviews. My initial LAC worked with me for several years and we had an excellent

7 NDIS participant experience in rural, regional and remote Australia

working relationship, and she had a really good grasp of the day-to-day challenges of living with MS.

Since then, I’ve had new LACs who, whilst pleasant and good at their jobs, don’t truly understand the complexity and changing requirements of the condition. I understand that it’s unrealistic for every person who works with NDIS participants to have in-depth knowledge of every condition, but it seems to me the development of dedicated teams who specialise in certain conditions (or groups of conditions) could be a way to better manage the allocation of skilled coordination staff to clients.”

The most significant change that can be made to the planning process to support people living with MS is to remove the current requirement for regular plan reviews. Participants should only be required to have a plan review when there are significant changes e.g. when their needs increase or there is a change in their carer/living situation.

MS Australia recommends:

Implementing the recommendations and actions of the NDIS Review’s “Working together to deliver the NDIS” report specifically:

o Recommendation 22: Embed a highly skilled, person-centred, disability aware culture across all disability agencies and governments; and

o Recommendation 4: Support all people with disability to navigate mainstream, foundational and NDIS service systems.

Improved planning and assessment processes including: o Minimise reassessments where the disease course and level of functional impairment is progressive or degenerative. o Adopt clearer and more timely communications to participants about decision-making processes, timelines and expectations.

o Improved and simplified pre-planning resources that better represent the NDIS journey.

o Examples of goals and corresponding services for a range of disability types.

o Planning meetings held over multiple sessions for people who have conditions that may increase fatigue, pain, ‘brain fog’ and memory issues, including MS.

o Best practice examples of Access Request Forms, Supporting Evidence forms and approved plans.

Resources and training for health professionals in how to support patients accessing and navigating the NDIS. Many health professional struggle to know what level of information is required by the NDIS and are overwhelmed by NDIS processes.

In addition to these recommendations, the NDIA must enhance its current inadequate communication regarding decision-making processes and timeframes. This includes issues such as unsuccessful access requests, modifications to plans, discontinuation of essential supports, pending approvals, internal reviews, and complaints.

8 NDIS participant experience in rural, regional and remote Australia

MS Australia recommends the NDIA:

Commit to educating and training all staff and contractors about people living with progressive generative, neurological and neuromuscular conditions such as MS.
Establish a resource library of disability materials for use by NDIA staff that includes MS Australia resources. Prior to a planning meeting, staff would use the library to access materials relevant to the participant’s disability. MS Australia would be very willing to engage with the NDIS on any further training or education materials required for the resource library.
Implement compulsory disability awareness training for all NDIA staff with a focus on improved communication, planning and access for people with disability.
Increase the number of NDIA staff who have lived experience of disability. b. the availability, responsiveness, consistency, and effectiveness of the National Disability Insurance Agency in serving rural, regional and remote participants Feedback from MS Australia LEEP members highlights that people living with MS who have NDIS plans experience limited contact with NDIA staff after the initial application process, outside of plan reviews or reporting a change of circumstances. There is a lack of individual choice and control over the NDIS planning process within rural, regional and remote locations due to multiple factors, including a transient health and NDIA workforce, staffing shortages, and low capacity of NDIA staff within these regions4. MS Australia has concerns regarding the current understanding of NDIA staff about people living with progressive, degenerative, neurological and neuromuscular conditions such as MS. Feedback from our Member Organisations indicates that people with MS have found that the limited understanding by NDIA staff of neurological conditions leads to ineffective planning sessions, inconsistent plans that do not address their needs and unnecessary reassessments or plan changes. There is also a lack of understanding of the importance of access to coordination of supports and assistive technology for people living with MS. Greater awareness, understanding and education of neurological and neuromuscular conditions such as MS are needed to ensure improved support, participant experience and outcomes.

Many NDIS participants living with MS have a self-managed plan, reporting that if the NDIA manages the funding it does not stretch as far. LEEP Members report being advised by peers in the MS community and service providers from the beginning to self-manage if they could, to ensure more choice and control over the funds and flexibility to respond to their changing needs if their MS symptoms worsen.

MS Australia recommends:

Implementing the recommendations and actions of the NDIS Review’s “Working together to deliver the NDIS” specifically:

o Recommendation 15: Attract, retain and train a workforce that is responsive to participant needs and delivers quality supports.

Introduce a substantial core group of staff (a Neurological Community of Practice) with expertise in neurological disorders and progressive degenerative, neurological and neuromuscular conditions who can act as a point for referral for all NDIA staff and contractors.

9 NDIS participant experience in rural, regional and remote Australia

c. participants’ choice and control over NDIS services and supports including the availability, accessibility, cost and durability of those services

Disability service providers encounter considerable hurdles when it comes to providing NDIS services in regional, rural, and remote areas. These obstacles encompass constrained infrastructure, geographical barriers, a scarcity of skilled workforce, restricted availability of specialised services, social and cultural isolation, the digital gap, as well as concerns regarding disaster readiness and response. These challenges are particularly pronounced for First Nations and remote communities, resulting in deficiencies in service provision and leaving many participants without crucial assistance.

A participant’s choice and control can be limited by the knowledge and experience of the LAC, as they often lack an understanding of the symptoms of specific conditions and therefore of needs in service delivery. For example, members of the LEEP commonly report that LACs do not understand the symptoms that heat sensitivity can cause for many people living with MS and the importance of being able to access air conditioning to manage symptoms. This problem can be exacerbated in a rural, regional or remote are where there is only LAC servicing a large area.

Availability

People with disability who live in rural areas of Australia encounter a compounding effect of the challenges associated with both disability and rural living. They frequently face the necessity of traveling extensive distances to access essential services and contend with additional financial burdens related to their disabilities5.

A member of the LEEP who lives in a regional city provided feedback that she has “been lucky to find the various supports needed and have currently engaged with most supports consistently now for a number of years”. There are over six local disability support providers through which she can access support workers. She accesses supports for garden maintenance, household cleaning and accesses community and allied health such as counsellor, physiotherapist and occupational therapist (OT). The only challenge regarding availability she has experienced is the OT, who until recently was the only option locally. The OT had a long wait time for appointments as she services more remote towns and is very sought after.

The same LEEP member outlines her key challenge with accessibility:

“The major issue I have with availability is accessing supports outside business hours as I work full-time. I imagine with a larger number of services available in a larger city this may not be such an issue as some of those businesses would likely work more broad hours..

Not having access to services outside hours presents a significant juggle trying to fit in my appointments along with my work. My employer is very flexible, but even so, with the number of MS-related medical appointments I have it’s a real challenge determining what my days will look like and minimising the amount of sick leave I need to take to cover appointments or extra time I need to work to account for absences.

In some instances, I have already had several required medical appointments in a week, and have had to make the choice to cancel NDIS-funded allied health appointments that would assist me in maintaining my physical health because it’s just too hard to fit everything in. In no way is this my employer’s fault, it’s just the reality of working full-time with a chronic condition. “

While the NDIS aims to grow capacity and develop participants in the workforce, there is not a great deal of consideration given by the NDIA, processes and providers to what that looks like in practise when a participant is working full-time.

10 NDIS participant experience in rural, regional and remote Australia

In response to an identified service gap of specialised supports in rural, regional and remote SA and NT, the MS Society SA/NT have implemented ‘outreach’ visits where an MS nurse, MS physio and a client engagement team member will provide face-to-face information sessions to people living with MS. A dual purpose of these visits is to provide disability service providers with training and education about MS, so that they can better understand the needs of their NDIS participants living with MS. This service is funded by MS Society SA/NT through donations.

Accessibility

MS Australia’s Member Organisations report that service availability has been an issue for a substantial period of time. However, smaller businesses have been opening to utilise the NDIA’s implementation of rural and remote loading and offering new service delivery options. As a result, more established organisations have encountered a substantial issue around losing staff to other providers due to the pay gap between organisations. This then has resulted in disruption for participants in having to change providers to maintain support.

There is a need for participants to access additional support around transportation whether it be paying for provider travel or additional support worker time to attend specialist appointments or obtain services chosen by the participant. Whilst the COVID-19 pandemic resulted in quick adaptation to technology for telehealth appointments, many participants are now wanting a return to face-to-face interaction, which may not be readily available in their area.

Additionally, there may be a lack of awareness and understanding of neurological and neuromuscular conditions within rural, regional and remote communities. This can lead to stigmatisation and social exclusion and hinder access to appropriate support services.

Cost

Case Study – Brigitte, lives in regional NSW

Brigitte self-manages her NDIS plan but has a support coordinator for part of her plan in case her symptoms worsen suddenly, and she is unable to talk. If she wants an in person visit from a support coordinator each visit could cost $500-$600 due to the cost of travel. A phone call to a support coordinator may cost $150 – however Brigitte prefers to meet face-to-face for more complex conversations.

Brigitte finds that she is “usually charged at the maximum rate determined by the NDIS, however there are a couple of my supports who just charge the regular rate they charge all their clients, NDIS or otherwise.” Brigitte often does not disclose that she is a NDIS participant when accessing a service as in her experience, the fee would be higher. For example, a NDIS cleaning service fee is more than regular cleaning service. This challenge is exacerbated by living in a regional area as there are fewer providers to choose from and travel time increases costs. If the provider is not able to charge for travel costs, they may insist on a minimum number of hours for the service to make the travel worth their time.

As allied health supports are often delivered face-to-face, travel costs take up a significant portion of the costs associated with delivering these supports. As a result, a substantial portion of the approved hours in a participant’s plan may be used for travel costs instead of therapy supports. Introducing a separate category for allied health travel would enable allied health professionals to travel to participants without using therapy support funding. Participants would have a separate therapy budget allocation in their plan. Delivering therapy support to clients in rural and remote locations attracts considerable travel costs that are not met by the current pricing. Given these increased and unpredictable costs, the NDIS pricing should allow providers to charge the actual cost of travel.

11 NDIS participant experience in rural, regional and remote Australia

MS Australia recommends:

Implementing the recommendations and actions of the NDIS Review’s “Working together to deliver the NDIS” report specifically:

MS Australia recommends a review of the pricing for therapy supports including:

A separately funded category for allied health travel costs including an allied health travel budget for participants.
Removing travel caps for services provided in MMM4 & MMM5 regions and allowing the actual cost of travel to be charged.

d. the particular experience of Aboriginal and Torres Strait Islander participants, participants from culturally and linguistically diverse backgrounds, and participants from low socio-economic backgrounds, with the NDIS

Feedback from MS Australia’s Member Organisations highlights the challenges that participants from a diverse backgrounds experience in accessing the NDIS. Amongst diverse communities there is limited education and awareness around the Scheme, a lack of understanding about what the participants can use their funds for and how to engage with service providers. Service providers, particularly in rural, regional and remote areas often lack understanding of cultural differences and may not be able to provide support that is respectful and appropriate for those cultures.

A member of the LEEP emigrated to Australia 20 years ago and reports that she still finds it difficult to communicate and understand the perspective of others sometimes and acknowledges that she would have found accessing the NDIS very challenging if she was a recent migrant. She has experienced challenges in finding a staff member who is invested in supporting people with disability from CALD backgrounds and learning about participant’s cultural or linguistic needs.

Participants from low socio-economic backgrounds experience disadvantage when accessing supports that require out of pocket costs. Support Coordination is essential to be included in these participants plans to help them maximise their NDIS plan as well as accessing other community funded supports or apply for grant funding depending on the scenario when out of pocket costs are required.

MS Australia understands that Aboriginal and Torres Strait Islander communities in regional, rural and remote settings are underserviced and that there is a cultural bridge in understanding about the definition of disability and understanding of the NDIS.

Alternative commissioning as outlined in the “Working together to deliver the NDIS” report, when driven by communities, would mean that First Nations communities have more access to culturally safe supports, and all people in remote communities would access more supports where they live. The implementation of this rollout should commence promptly, engaging interested communities from the outset to empower them in acquiring the skills and assurance needed to develop and execute alternative commissioning methods. It is imperative that the design and implementation process be conducted in authentic collaboration with these communities, leveraging their inherent strengths and capacities. Such an approach has the potential to make significant strides in closing the gap by bolstering the community-controlled sector and fostering the emergence of a more resilient, localised workforce. Central to the success of

12 NDIS participant experience in rural, regional and remote Australia

alternative commissioning is effective governance, marked by shared decision-making with First Nations communities and the establishment of sustainable, place-based governance structures.

MS Australia recommends:

Implementing the recommendations and actions of the NDIS Review’s “Working together to deliver the NDIS” report specifically:

o Recommendation 3: Provide a fairer and more consistent participant pathway NDIS easier; and

o Recommendation 14: Improve access to supports for First National participants across Australia and for all participants in remote communities through alternative commissioning arrangements.

13 NDIS participant experience in rural, regional and remote Australia

References

1 NDIS (31 December 2023). NDIS Quarterly report to disability ministers: Q2 2023-24. Retrieved from: https://www.ndis.gov.au/about-us/publications/quarterly-reports

2 Department of the Prime Minister and Cabinet (October 2023). Working together to deliver the NDIS Independent Review into the National Disability Insurance Scheme: Final Report. Page 39. Retrieved from: https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis

3 Veli-Gold S, Gilroy J, Wright W, Bulkeley K, Jensen H, Dew A, et al. The experiences of people with disability and their families/carers navigating the NDIS planning process in regional, rural and remote regions of Australia: Scoping review. Aust J Rural Health. 2023; 31: 631–647. https://doi.org/10.1111/ajr.13011

4 Gilroy J, Veli-Gold S, Wright W, Dew A, Jensen H, Bulkeley K, et al. Disability workforce and the NDIS planning process in regional, rural and remote regions of Australia: Scoping review. Aust J Rural Health. 2023;31:839–854. Retrieved from: https://doi.org/10.1111/ajr.13020

5 Australian Institute of Health and Welfare. Rural and remote health. Canberra, ACT: Australian Institute of Health and Welfare; 2020. Retrieved from: https://www.aihw.gov.au/reports/rural-remote-australians/rural-and-remote-health

MS Australia   | PO Box 625, North Sydney NSW 2059  |  www.msaustralia.org.au    | ABN 51 008 515 508

14 NDIS participant experience in rural, regional and remote Australia