Submission 80 — Victorian Rural Advocacy Network (VICRAN) — Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

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Victorian Rural Advocacy Network (VICRAN)

Submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

December 2022

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Introduction:

1.  The Victorian Rural Advocacy Network (VICRAN)  is an independent advocacy

network comprised of seven advocacy agencies that operate within regional and rural Victoria. All VI CRAN members receive federal funding under the National Disability Advocacy Program (NDAP). As set out in our Mission Statement, our goal is to ensure that people with disabilities living in rural and regional Victoria have access to the 1 resources and services to meet their needs. VI CRAN works towards the removal of all barriers preventing people with disabilities from participating fully in the life of the community. Our vision is for community recognition of the rights of people with disabilities. As an independent organisation, we aim to provide valuable insight into the experience of those living with disability and the disability sector. VI CRAN represents decades of knowledge and experience within the disability sector and hope to share our insights gained by listening to people living with disabilities.

2. VICRAN welcomes the opportunity to make a submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. VICRAN welcomes contact from the Royal Commission for further information or clarification.

3. VICRAN wishes to emphasise the extremely poor history of collaboration between government departments and the disability sector. VI CRAN hopes that by sharing our experiences of advocating for people with disabilities, the Royal Commission will make appropriate recommendations to prevent violence, neglect, abuse, and exploitation against people with a disability.

4. The following submission identifies some of the key issues and challenges that are experienced by advocacy organisations working within rural and regional Victoria to improve the rights of people living with a disability. Our network’s main goal is to achieve better outcomes for people with disabilities in rural and regional areas as currently this is hindered due to a lack of ongoing funding and services. We hope that by sharing our insights and experiences we can demonstrate the vital necessity of funding for face-to-face individual advocacy as this best supports rural and regional communities. In addition, we aim to emphasise the need for people with disabilities in rural and regional communities to be consulted appropriately and for government departments to move towards co-designing services with people with lived experience.

Unique nature of rural and regional disability sector

5. The following factors highlight the need for face-to-face localised advocacy support to have long-term funding to ensure that rural and regional people living with disabilities are not disadvantaged.

Geographical challenges and access to services in rural areas

6. It is well recognised that individuals living in rural areas have a reduced access to health and disability services compared to those living in regional centres or metropolitan areas. As the Victorian Government notes, an individual’s postcode ’directly affects

1 Victorian Regional Advocacy Network, VICRAN Constitution (2021).

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their outcomes in life’ as the geographic location of where someone lives greatly influences their health, wellbeing and access to opportunities and services.2 For individuals in rural areas living with a disability, the impact of their disability is even more significant. The rate of people living in rural and remote areas of Australia living

with a  disability  is 23 .1% which  is higher when compared  to those  living in

metropolitan areas which is 16.4%.3 As Quilliam et al. affirm, the disparate geography of rural Australia has shaped the health and disability sectors, influencing the way that individuals living in rural areas are able to engage with it.4 The lack of allied health and disability services in rural areas influences the ability of individuals with a disability to access timely and effective therapeutic services.5 The NDIS itself recognises the

importance  of  early therapeutic  intervention  for people  living with  disabilities,

highlighting the need for individuals living in rural areas to have access to appropriate services. However, the lack of locally available services results in people with

disabilities being  required  to  travel  considerable  distances  to  receive  services.

Additionally, as Dew et al. note, travel requires additional investment in time and money for participants in covering expenses for accommodation, food and time away from work for carers.

7. For individuals living in rural areas where there is not a large enough population to sustain an allied health or disability service, they are required to travel to a regional centre to access vital services. This ‘hub and spoke’ model of service creates significant logistical challenges for people living with disabilities and their support network as organising transport is costly and time-consuming. Accessing convenient and cost­ efficient transport is a key element for individuals living with a disability to maintain independence and exercise key rights.6 Therefore, a lack of accessible, cost-efficient, and timely transport options will limit a person’s ability to attend appointments, maintain employment and participate in community life. Our organisations express grave concerns regarding transport options and arrangements for people living in rural areas to access necessary appointments and services.

8. As rural areas are not serviced by public transport or accessible public transport options, NDIS participants are reliant upon private transport services. Where public transport is available, it often is unreliable or fails to meet accessibility needs as demonstrated by buses replacing trains on many rural and regional services in Victoria’s train network. It can take several months to organise transportation for someone with a disability to attend an appointment in a larger regional town. In addition, as the 2022 Australian Institute of Health and Welfare Report highlights, 21 % of people living with a disability

2 Department of Premier and Cabinet, A framework for place-based approaches, (Report, 2020)

3 Rhys Dintino, Luke Wakely, Rebecca Wolfgang, Katrina Wakely, Alexandra Little ’Powerless facing the

wave of change: the lived experience of providing services in rural areas under the National Disability Insurance Scheme’ (2019) 19 Rural and Remote Health. 4 Claire Quilliam, Aime O’Shea, Nadine Holgate, Laura Alston, ‘Starting with us: Imagining relational, co­ designed policy approaches to improve healthcare access for rural people with disability’ (2022) June Australian

Journal of Rural Health

5 Angela Dew, Kim Bulkeley, Craig Veitch, Anita Bundy, Gisselle Gallego, Michelle Lincoln, Jennie Brentnall

& Scott Griffiths, ‘Addressing the barriers to accessing therapy services in rural and remote areas’, (2013) 35(18) Disability and Rehabilitation, 1564-1570 6 Australian Government Solicitor, Report on the key elements of the legislative framework affecting people with disability (Report,2020)

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in Australia  require assistance with  transport.7 The  geographical  challenges  of

individuals in rural areas living with disabilities must be addressed in government funding of localised advocacy services which have local knowledge and understanding to best support individuals living with disability.

Southwest Advocacy Case Study

We have observed significant challenges experienced by people with mobility issues in accessing transport to attend appointments. In Warrnambool (regional Victoria) individuals in wheelchairs have had to travel to Melbourne via train in the luggage/freight carriage due to a lack of accessible entryways for a wheelchair to enter the passenger carriage. In addition, in circumstances where buses are replacing VLine train services, individuals who rely on wheelchairs are unable to use these services as the buses are not accessible for wheelchairs. NDIS funding for transport is necessary to enable participants to travel to other locations including attending key medical appointments.

9. As allied health professionals tend to be in regional centres, significant time and costs are associated for professionals to visit NDIS participants in rural areas when required. One of the NDIS’ main assessment tools is a ‘Functional Capacity Assessment’. 8 This assessment requires an Occupational Therapist to visit a participant in their home environment to determine what services or modifications may be required for a participant to be supported to live in their own home. The need for therapists to travel to see clients results in the need for additional funding to be provided within participant NDIS plans for individuals living in rural areas to receive adequate therapeutic services. However, despite the need for the NDIS to recognise these additional travel costs in participant plans, our organisations have observed the trend in recent NDIS plans omitting necessary funding to cover the costs of therapist travel time, resulting in participants’ therapy time being effectively cut as a result.

Retention and quality of workforce within disability sector

10. There continues to be an ongoing shortage of  rural  allied health professionals

particularly in disability service areas. 9 Our organisations have directly observed the challenges faced by participants arising from workforce retention issues and the overall quality of the rural disability workforce. As Gallego (2015) affirms, the instability of employment in rural areas greatly impacts worker retention in disability services. 10 The lack of job security for employees within the rural disability sector significantly disadvantages NDIS participants. Veitch et al. (2012) note that despite recognition of the importance of staff retention for sustainable health service delivery, policies and

7 Australian Institute of Health and Welfare, People with disability in Australia 2022, (Report, 2022).

8 National Disability Insurance Scheme, Selection ofAssessment Tools, (2020)

9 Gisselle Gallego, Rebecca Jean Chedid, Angela Dew, Michelle Lincoln, ‘Who are they and what do they do? Profile of allied health professionals working with people with disabilities in rural and remote New South Wales’ (2015) 23(4) Australian Journal ofRural Health 10 Ibid.

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structures fail to provide for this. The retention of allied health professionals in rural areas is linked to a lack of professional support, social isolation, and the perception of better career opportunities in larger metropolitan centres.11 As data from a study conducted in rural NSW demonstrated, a lack of career development and progression as well as limited resources acted as the key deterrents to rural employment. 12 This has resulted in a trend of therapists staying in rural or regional areas for only a few years before moving to larger regional or metropolitan areas for further career opportunities. This has been observed by rural allied health services.13

11. The inability of rural areas to retain disability sector workers directly impacts the ability of NDIS participants to access appropriate and effective services. Compounding the issue of geographic access to services and therapists is the issue of unavailability of practitioners due to staffing challenges. 14 Our organisations have observed waitlists between 12-18 months for people in rural areas trying to access key services including occupational therapy, speech pathology and physiotherapy.

12. As a 2019 Public Interest Advocacy Centre Report highlighted, NDIS funding does not factor in the unavailability of services within rural and regional areas, resulting in cuts to participant plans if they are unable to utilise a service due to a lack of available or accessible therapists. 15 The NDIA must therefore recognise the unavailability of

    services when allocating funding to participants and should not disadvantage

participants for being unable to use funding for a particular therapy if they are unable to access this.

13. Additionally, there is a need for policy interventions to tackle the challenge of recruiting and maintaining rural therapists to alleviate this issue. Our organisations have observed a high turnover of staff within the disability sector, resulting in participants falling through the cracks and increasing confusion and stress of participants. A lack of continuity of support arrangements is detrimental to progression towards participants achieving their NDIS goals. As well these impacts adversely on the capacity building

    of participants as capacity building requires stable and reliable therapeutic

interventions. In addition, the lack of continuity of care results in ineffective monitoring of services and health outcomes. 16

11 Rhys Dintino, Luke Wakely, Rebecca Wolfgang, Katrina Wakely, Alexandra Little ’Powerless facing the

wave of change: the lived experience of providing services in rural areas under the National Disability Insurance Scheme’ (2019) 19 Rural and Remote Health.

12 Craig Veitch, Angela Dew, Kim Bulkeley, Michelle Lincoln, Anita Bundy, Gisselle Gallego, Scott Griffiths,

‘Issues affecting therapist workforce and service delivery in the disability sector in rural and remote NSW, Australia’ (2012) 12 Rural and Remote Health

13 Angela Dew, Kim Bulkeley, Craig Veitch, Anita Bundy, Gisselle Gallego, Michelle Lincoln, Jennie Brentall

& Scott Griffiths, ‘Addressing the barriers to accessing therapy services in rural and remote areas’ (2013) 35(18)

Disability and Rehabilitation

14 Claire Grant, Anne Jones, Helen Land, ‘What are the perspectives of speech pathologists, occupational therapists and physiotherapists on using telehealth videoconferencing for service delivery to children with developmental delays?’ (2022) 30 Australian Journal ofRural Health

15 Public Interest Advocacy Centre, A Fairer NDIS - Issues Paper, (2019)

16 John Walkerman, John Humphreys, Robert Wells, Pim Kuipers, Philip Entwistle and Judith Jones, ’Primary

health care delivery models in rural and remote Australia’ (2008) 8 BMC Health Services Research

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14. The challenges of workforce retention in rural and regional areas highlights the necessity for continued funding of localised advocacy services. Localised knowledge of advocates living and working within the community enables advocacy organisations to have awareness of smaller programs which may assist to fill in the gaps in the rural disability sector. For many people living with a disability in rural or regional areas smaller support groups or community services remain a vital support. However, without localised advocacy organisations to assist in connecting participants to lesser-known services through word-of-mouth recommendations, there is a concern that participants will remain disconnected from key services. VICRAN has observed that advocacy organisations play a key role in connecting individuals to services as for many people it is challenging to find an appropriate support or service without assistance from someone with localised knowledge or experience.

15. In addition to ensuring that the disability sector has adequate staffing, it is vital that the sector is subject to proper oversight to prevent fraud and abuse. Significant change is required to ensure that individuals responsible for breaches of care are held responsible and accountable by funding bodies. VICRAN organisations have observed the failures of existing overarching bodies to act appropriately in response to reports of abuse and fraud by service providers and employees within the sector. Our experiences have demonstrated that the NDIS has - to hold service providers responsible and accountable for are and that current reporting mechanisms are not adequate to do so. Existing safeguards have proven to be ineffective, necessitating change to protect participants, and the wider community, from abuse and fraud.

Lack of choice of service providers for people living in rural and regional areas

16. Arising from the geographical challenges and difficulties of disability workforce retention, individuals living in rural and regional areas have a limited choice in service providers. 17 This limited choice renders it extremely important for individuals to have localised advocacy organisations that they can tum to when they experience difficulties with a particular service.

17. For individuals who may have an issue or concern in relation to their service provide, where there is either limited or no choice of service provider, it can be difficult to raise concerns out of fear that they will lose access to that key therapy or service. In many rural areas there is no option for individuals to simply change providers as it would mean participants using their NDIS plan to cover transportation costs to travel to another area for a service. Without local advocacy organisations, which are known within the community through word of mouth or their physical presence such as having physical office space and through community events, individuals have nowhere to tum to when they experience issues with a service provider.

18. The role of advocacy organisations is therefore to provide independent assistance and advice to individuals as to how to best respond to their concerns, manage their concerns and to assist them to raise their concerns and when necessary, make a formal complaint.

17 Gisselle Gallego, Rebecca Jean Chedid, Angela Dew, Michelle Lincoln, ‘Who are they and what do they do? Profile of allied health professionals working with people with disabilities in rural and remote New South Wales’ (2015) 23(4) Australian Journal ofRural Health

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As Quilliam et al. (2019) note, place-based information and guidance provides for contextually appropriate services to be provided to individuals, emphasising the challenges created by centralised approaches. Localised approaches are vital as they can better engage with the complexities of intersecting local factors that consider the specific circumstances of a place and its people.18

Further challenges of First Nations people with disabilities

19. As the Aboriginal and Torres Strait Islander Health Performance Framework 2017 report outlined, First Nations people are more likely than any other Australian to have a disability with 9% of First Nations people living with a ‘severe condition’ compared to 4% of the non-First Nations people population.19 The 2014-15 National Aboriginal and Torres Strait Islander Social Survey outlined that 45% of Aboriginal and Torres Strait Islander people aged 15 years and over were living with a disability or a restrictive long-term health condition.20 In Victoria, one in ten Aboriginal and Torres Strait Islander people reported to have a profound or severe disability.21

20. Despite the higher prevalence of disability within Aboriginal and Torres Strait Islander communities, these communities make up only 5. 7% of overall NDIS participants. 22 As a consequence, a quarter of Aboriginal and Torres Strait Islander people had provided unpaid care for a person with a disability or long-term health condition in the past four weeks.23

21. VICRAN organisations have observed the complex challenges experienced by First Nations people with disabilities in trying to access key services and navigate

government systems. We have particularly observed the challenge in finding culturally responsive services that recognise and respond to cultural differences. As Dew et al. (2019) affirm, lack of engagement oflndigenous people with disability services relates to the negative impacts of colonisation.24 Our organisations have observed that Indigenous people often mistrust government services arising from Australia’s colonial history and government interference with Indigenous communities. As Townsend et al. (2018) note, the long-term consequences of intergenerational disenfranchisement have contributed to a reluctance of Aboriginal and Torres Strait Islanders to seek help. Additionally, this has resulted in Indigenous communities having suspicions of non­ Indigenous workers arising from the inability of government services to recognise and adapt to the cultural divide between mainstream services and Indigenous cultures. 25 In their submission to the Royal Commission, the Victorian Aboriginal Child Care Agency emphasised that a lack of cultural competency in service providers contributes

18 Department of Premier and Cabinet, A framework for place-based approaches, (Report, 2020)

19 Australian Health Ministers’ Advisory Council, Aboriginal and Torres Strait Islander Health Performance

Framework (Report, 2017) 20 Australian Bureau of Statistics, National Aboriginal and Torres Strait Islander Social Survey, (Report, 2015) 21 Australian Bureau of Statistics, National Aboriginal and Torres Strait Islander Social Survey, (Report, 2015)

22 National Disability Insurance Scheme, Aboriginal and Torres Strait Islander Report, (Report, 2019)

23 Australian Bureau of Statistics, National Aboriginal and Torres Strait Islander Social Survey, (Report, 2015)

24 Angela Dew, Rebecca Barton, John Gilroy, Lee Ryall, Michelle Lincoln, Heather Jensen, Vicki Flood, Kerry

Taylor, Kim McCrae, ‘Importance of Land, family and culture for a good life: Remote Aboriginal people with disability and carers’ (2019) 55 Australian Journal of Social Issues 25 Ibid.

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to  further mistrust amongst  First Nations  clients.26 This highlights the  limited

representation of First Nations people within the disability workforce and the lack of First Nations specific services. In addition, the National Aboriginal Community Controlled Health Organisation submitted to the Royal Commission that investing in a workforce of trained First Nations staff would ensure that a culturally appropriate workforce is available to First Nations people living with disabilities.27

22. Our organisations have additionally observed the failure of government policies to recognise the unique complexities of disability within Aboriginal cultures. Townsend et al. (2018) assert the need for culturally appropriate assessment tools to identify the prevalence of disability within Indigenous communities as tools used in non-Indigenous communities may not be appropriate.28 This complements Dew et al’s (2019) findings that the NDIS and government policies often fail to recognise the exceptional status of Aboriginal people with disabilities.29 Further, the complex nature of disability and the prevalence of dual diagnoses results in the need for more specialist experience for

    screening and assessment of disability amongst Aboriginal and Torres Strait

Islanders.30 It is important that government funding invests in community relations and prioritises building trust within the community. As Queensland Aboriginal and Torres Strait Islander Child Protection Peak submitted to the Royal Commission, there is a pattern where children who fail to receive an early diagnosis consequently do not receive any supports which has flow on effects for their futures.31 Similarly, Health Justice Australia noted that First Nations children with disabilities are often caught up in the criminal justice system instead of receiving the support that they need to manage their disabilities.32 It is vital that First Nations people living with disabilities are supported by localised advocacy organisations to help them to stand up for themselves when centralised systems fail to provide adequate assistance.

23. A further barrier for Aboriginal and Torres Strait Islanders with a disability in accessing services is their geographic proximity to allied health and other key services.33 As 10% oflndigenous people live in remote communities and 16% in very remote communities this poses a substantial challenge for policy makers and service providers. 34 As a 2011 Productivity Commission Report outlined, half of Indigenous Australians seeking health services reported to have no available health service in their area. For individuals living with a disability in remote areas there is also a significant lack of adequate

26 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Overview of Responses of experience ofFirst Nations people in Australia (Report, 2021) 27 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Overview of Responses of experience ofFirst Nations people in Australia (Report, 2021)

28 Claire Townsend, Paul White, Jennifer Cullen, Courtney Wright, Heidi Zeeman, ’Making every Australian

count: challenges for National Disability Insurance Scheme and the equal inclusion of homeless Aboriginal and Torres Strait Islander Peoples with neurocognitive disability’, (2018) 42 Australian Health Review 227-229.

29 Angela Dew, Rebecca Barton, John Gilroy, Lee Ryall, Michelle Lincoln, Heather Jensen, Vicki Flood, Kerry

Taylor, Kim McCrae, ‘Importance of Land, family and culture for a good life: Remote Aboriginal people with disability and carers’ (2019) 55 Australian Journal of Social Issues 30 Nicholas Biddle, Indigenous Australians and the National Disability Insurance Scheme, (Report, 2014) 31 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Overview of Responses of experience ofFirst Nations people in Australia (Report, 2021) 32 Ibid. 33 Nicholas Biddle, Indigenous Australians and the National Disability Insurance Scheme, (Report, 2014) 34 Ibid.

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housing and transport which further exacerbates existing challenges to accessing key services. Consequently, only 14% of Aboriginal and Torres Strait Islander people reported excellent or very good self-assessed health compared with 53% of those

without  a  disability.35 VACCA's  response  to  the  Royal Commission  inquiry

highlighted the experiences of carers and parents of First Nations children with a disability.36 That is that the NDIS is difficult to navigate, resulting in a lack of engagement with the NDIS.37

24. It is therefore important for First Nations people to be provided with clear and simple information to assist them in making choices about disability services and that localised organisations that are culturally aware can provide this information. Many First Nations people living with a disability feel intimidated by government representatives when advocating for themselves, resulting in a need for advocacy organisations to assist First Nations communities to build their self-advocacy skills.38

    25. Localised face-to-face advocacy organisations that have experience and detailed

knowledge of their local communities including cultural awareness are best suited to provide this information. Local advocacy organisations are much more effective than centralised systems which have historically failed to provide culturally appropriate support to local Indigenous communities.

Rights Information Advocacy Centre Case Study

We have heard from Indigenous NDIS participants who have highlighted the common occurrence of being subjected to racial discrimination and derogatory language from support workers and other support personnel within the NDIS framework. It is vital that changes occur to ensure that Indigenous NDIS participants are not humiliated by their support workers or discriminated against when trying to access key services.

In addition to this, we have observed Indigenous participants facing challenges in trying to find culturally appropriate services that are best suited to their needs. The Rights Information Advocacy Centre (RIAC) highlights the importance of culturally appropriate services to ensure the safety and wellbeing of Indigenous NDIS participants and the need for better education of staff involved in the NDIS system to eliminate racial discrimination.

Key issues VICRAN has observed

Technology treated as the answer despite establishing additional barriers

35 Australian Bureau of Statistics, National Aboriginal and Torres Strait Islander Social Survey, (Report, 2015) 36 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Overview of Responses of experience ofFirst Nations people in Australia (Report, 2021) 37 Ibid.

38 Public Interest Advocacy Centre, A Fairer NDIS - Issues Paper, (2019)

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26. The shift from in person appointments to telehealth has not been successful for all those individuals living with a disability nor has it alleviated previous barriers to accessing necessary services. 39

27. Despite technology being presented as a solution to the challenges of NDIS participants living in rural and regional areas it creates additional barriers which increase the difficulties of people to access to appropriate services. Whilst practical barriers such as poor internet and phone coverage impact upon the ability of individuals living within rural and regional areas to access telehealth appointments there are also many systemic barriers. As McGrath et al. (2022) affirm, many specialist practitioners that NDIS participants need to see for appointments to maintain their plans are unwilling to provide telehealth appointments. Furthermore, the digital divide and low socio­ economic position of some members within rural and regional Victoria have prevented telehealth from being able to offer a solution to previous concerns.40 Data published by the ABS in 2020 found that 11% of individuals living with a disability did not have the appropriate technology to access ongoing telehealth consultations following the lifting

    of restrictions during the COVID-19 pandemic.41 With more than 2.5 million

Australians not using the internet, digital exclusion continues to act as a barrier for telehealth to alleviate pre-existing challenges. This is particularly so as 23% of those not using the internet have a disability.42 However, telehealth does alleviate the need for individuals living in remote and rural areas to travel to access key services and therefore reduces the costs and logistics associated with this travel.43

28. It is also important that individuals living with a disability can exercise agency over their health and wellbeing and choose appropriate services that are suited to their individual needs. As ABS data from 2020 affirmed, 22% of adults with a disability preferred to attend an in-person appointment with a health professional as opposed to a telehealth consultation.44 For individuals from CALD or First Nations communities the need for in-person and face to face services is even more important.

Gippsland Disability Advocacy Inc. Case Study

Although the use of technology can improve accessibility for some individuals it can also contribute to reduced accessibility for many people with disabilities and those with limited technological skills. As one client highlighted, screen reading technology used by blind or low vision individuals is unable to read images that may include text such as infographics. During the COVID-19 pandemic this created significant accessibility gaps as infographics were widely used by governments, councils, and other organisations to distribute information which was not accessible for blind or vision impaired individuals. In addition, clients

39 Claire Quilliam, Amie O’Shea, Nadine Holgate, Laura Alston, ‘Starting with us: Imagining relational, co­ designed policy approaches to improve healthcare access for rural people with disability’ (2022) Australian

Journal ofRural Health

40 Ibid. 41 Australian Institute of Health and Welfare, People with disability in Australia 2022, (Report, 2022). 42 Australian Institute of Family Studies, The digital divide in telepractice service delivery, (Report, 2021) 43 Lisa Caffery, Olav Muurlink, Andrew Taylor-Robinson, ‘Survival of rural telehealth services post-pandemic in Australia: A call to retain the gains in the new normal’ (2022) Australian Journal ofRural Health 44 Australian Institute of Health and Welfare, People with disability in Australia 2022, (Report, 2022).

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highlighted that the shift towards reliance on technology resulted in clients having to learn new technology which was difficult to do without face-to-face assistance from advocacy organisations.

29. Furthermore, not all conditions or treatments are recommended to be delivered via telehealth for individuals living with a disability.45 As Grant et al. (2020) note, there are concerns regarding the efficiency of telehealth as a mode of allied health service delivery for children. For children with complex disabilities, including children with autism spectrum disorder and communication disorders, telehealth has failed to provide an effective or appropriate mode of service delivery as children struggled to engage through the screen.46 A University of Melbourne study on practitioner experiences with

    telehealth found that children often experienced ‘extreme reactions’ including

meltdowns, anxiety, and aggressive behaviour with response to the shift to telehealth.47 In addition, speech pathologists described worse outcomes for clients due to reduced engagement and slower progress compared to in-person consultations.48 Telehealth should therefore be offered to complement existing services but should not replace existing services completely. 49 It is also vital that over the phone or face to face services are continued to be available for people as alternative pathways to online services.

30. Our organisations have observed the challenges faced by individuals trying to access services online and navigate technological challenges. For example, our organisations have seen library services in Victoria bombarded with requests to assist individuals to access the internet, set up their technological devices and assistance with using these devices. It is not enough that individuals are provided with technology, it is necessary for individuals to be supported to use the technology effectively and safely.

31. The increasing shift towards telehealth consultations during the COVID-19 pandemic has resulted in an increasing need for individuals living with a disability to have access to face-to-face individual advocacy in their local communities. Without a localised advocacy service, individuals may experience issues with service providers or may not be able to be linked in with appropriate services or therapies. It is often through word of mouth and previous client recommendations that participants can find appropriate services best suited to their needs, highlighting the importance of local advocacy organisation to facilitate these connections. Furthermore, without local face-to-face advocacy organisations individuals that may need assistance with managing their plans or resolving issues may have nobody in their community to tum to when they require on the ground assistance.

45 Ibid. 46 Claire Grant, Anne Jones, Helen Land, ‘What are the perspectives of speech pathologists, occupational therapists and physiotherapists on using telehealth videoconferencing for service delivery to children with developmental delays?’ (2022) 30 Australian Journal ofRural Health

47 Stephanie Fibray, Rana Hinman, Belinda Lawford, Rhyan Fry, Kim Bennell, Telehealth by allied health

practitioners during the COVID-19 pandemic (Report, 2021) 48 Ibid. 49 Morgan Liotta, ‘Telehealth Valued by NDIS Participants’, (2021) Royal Australian College of General

Practitioners Newsletter

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Recommendations:

32. As technology will continue to be utilised, funding must be provided to local advocacy organisations to provide training and assistance to individuals to develop the necessary skills to use technology. It is not enough that individuals are provided with the devices, ongoing funding must be provided to participants and their advocates to be able to develop skills through training programs and workshops.

33. VICRAN additionally recommends that participants continue to receive transport funding to be able to attend in-person appointments with medical and allied health practitioners. Individuals should have the choice to determine whether they would prefer to have their appointment in person or virtually and should not have this choice taken away from them due to a lack of appropriate transport funding.

34. Our organisations emphasise the need for local advocacy organisations to be consulted during the implementation of recommendations to ensure that individuals with disabilities needs are reflected in any policy changes.

Importance of local communication channels for individuals accessing information

35. The World Health Organisation (WHO) has emphasised the importance of addressing communication barriers in improving the health and wellbeing of people living with disabilities.50 In 2020 the Royal Commission expressed concerns that information provided by the Australian government in relation to the pandemic was not provided in an accessible format, resulting in an unequal access to information for people with disabilities.51 Furthermore, the Royal Commission emphasised the failure of the

    government’s centralised communication strategies to provide information in

community languages, in First Nations Languages and in Auslan. In addition, the government’s lack of strategy for disseminating information to people without internet access, and the consequential need for active outreach within the community, was emphasised.

36. The social and geographic proximity of rural and remote communities ensure that health professionals know individuals outside of their role as a health practitioner. These relationships are vital to ensuring that individuals have the support to navigate concerns regarding access to key services. 52

    37. As a 2021 Deloitte Report noted, community trust in healthcare providers and

institutions is important for the health and wellbeing of community members and plays a significant role in determining whether and how people choose to access services.

50 World Health Organisation, Disability and Health, (2021) Accessed: https://www.who.int/news-room/fact­ sheets/detail/disability-and-health 51 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Statement of Concern: The Response to the COVID-19 Pandemic for people with disability, (2020) 52Claire Quilliam, Amie O’Shea, Nadine Holgate, Laura Alston, ‘Starting with us: Imagining relational, co­ designed policy approaches to improve healthcare access for rural people with disability’ (2022) Australian

Journal of Rural Health

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Furthermore, trust in providers of health services has been reported to contribute to better health outcomes and individuals’ satisfaction in the care they receive. 53

38. The Barwon Disability Resource Council (BDRC) Vaccine Outreach Program Report provided key insights into the successes and failures of community engagement. The BDRC reported that trusted relationships arising from face-to-face meetings received a better response to vaccine information than generalised messages targeting Victorians as a whole.54 An example provided in the BDRC’s report noted that community members did not display a positive response to being told what to do by people from outside of their community but were more responsive to having discussions with people at community dinners and events.55 Consequently, 91 % of clients from direct community engagement as opposed to 9% from indirect engagement, highlighting the success of localised face-to-face approaches. 56

Recommendations:

39. VICRAN recommends funding long-term advocacy organisations in rural and regional areas to provide localised communication channels to individuals. It is vital that individuals living in rural and regional areas have organisations that they trust and can

    tum to when they have questions or concerns. Current centralised models of

information via telephone lines or the internet are not effective in relaying information to individuals with disabilities and their carers and often fail to provide accessible information.

40. Our organisations wish to highlight the need for advocacy organisations to be consulted on the modes of distribution of information to ensure that information is accessible for individuals with disabilities and their carers.

Environmental disasters in remote and rural areas requiring local advocacy support

41. As climate change progresses, the frequency, severity, and cost of natural disasters in Australia will also increase. 57 Whilst different populations face similar exposure risks to the negative impacts of environmental disasters, individuals with disabilities are disproportionately affected due to a lack of accessible evacuation strategies and recovery efforts which are not implemented with the needs of person with a disability in mind. 58 This includes communication and information distribution methods which are often inaccessible to people with disabilities during natural disasters. Inclusive approaches to disaster relief are therefore needed to ensure that individuals with

53 Johanna Birkhauer, Jens Gaab, Joe Kossowsky, Sebastian Hasler, Peter Krummenacher, Christoph Werner,

Heike Gerger, ‘Trust in the health care professional and health outcome’, (2017) 12(2), Plos One.

54 Barwon Disability Resource Council, Summary of Vaccine Outreach Program (Report, 2022)

55 Ibid. 56 Ibid.

57 Tessa Satherly, Dr Daniel May, ‘Natural Disasters and Climate Risk’ (2022), Australian Parliamentary

Library Briefing

58 United Nations, Disability Inclusive Disaster Risk Reduction and Emergency Situations (2022) Accessed: https ://www.un.org/development/ desa/ disabilities/issues/disability-inclusive-disaster-risk-reduction-and­ emergency-situations.html

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disabilities are not  neglected  or  left behind,  highlighting  the need  for  further

co-design.59

42. People with disabilities may require assistance with activities of daily living rendering it vital that they have on the ground assistance and support to be able to continue to receive assistance during or following a natural disaster.60 As the Royal Commission noted, people with disabilities face additional barriers to accessing food and nutrition during emergencies due to supply issues or if support workers or family are unable to assist them to access food.61 Furthermore, if specialised equipment, medication or

    continence products are required it is important that individuals with disabilities

continue to be able to access these during emergencies.

43. Our organisations have witnessed individuals with disabilities slipping through the cracks during disaster management. As the University Centre for Rural Health

    highlighted, to reduce the neglect of people with disabilities it is important for

governments to work with local disability advocacy organisations to understand and respond to the needs of individuals with disabilities. 62 Individuals with a disability are more likely to be displaced by natural disasters, creating a subsequent need for alternative housing. A lack of affordable and appropriate accommodation has often resulted in individuals with a disability living in unsafe accommodation or being relocated to areas without their formal and informal support networks.63 In these situations it is vital that local advocacy organisations can provide on the ground assistance to ensure that individuals with disabilities are not neglected during natural disasters.

Recommendations:

44. VICRAN recommends that people with disabilities are included in disaster planning and risk management via a co-design process. Without first-hand knowledge and experience of living with a disability, disaster management will continue to neglect the needs and experiences of those with disabilities.

45. VICRAN also recommends providing additional funding to advocacy organisation in disaster-prone areas to provide localised information to individuals when disasters occur and to assist to coordinate the provision of key services and supports. As recent flooding in rural Victoria highlighted, without on the ground advocates to assist, many individuals with disabilities will continue to be neglected in times of crisis.

46. Increased funding to local advocacy organisations would also enable individuals living in disaster-prone areas to receive guidance and support from local advocates to provide long-term solutions to environmental vulnerabilities. For example, local advocates could assist participants to find housing in less low-lying areas or in locations that are

59 Michelle Villeneuve, ‘Building a roadmap for inclusive disaster risk reduction in Australian communities’ (2021) Progress in Disaster Science 10(1). 60 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Issues Paper Emergency Planning and Response, (2020) 61 Ibid. 62 University Centre for Rural Health, Submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation ofPeople with Disability: Emergency Planning and Response (2020) 63 Ibid.

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less susceptible to environmental disasters. Local advocacy organisations would also be able to conduct consultation and education sessions with local emergency response personnel to ensure that they are aware of the particular vulnerabilities of people with disabilities during environmental disasters.

Recommendations for future allocations of funding

Co-design

47. Article 4(3) of the Convention on the Rights of Persons with Disabilities states that people with a disability must be represented in the development of relevant legislation and policies. Therefore, it is vital that individuals living with disabilities and their carers, are involved in the co-design of government policies and schemes involving disability. The Productivity Commission Report in 2011 highlighted the need for a shift in decision-making to people with a disability and their carers however, governments continued to fail in providing appropriate co-design mechanisms. The Inclusive Victoria State Disability Plan recognises the need for ‘co-design with people with disability’. Numerous studies have emphasised the need for future disability policy to be directed by individuals with a disability living in rural and regional areas to ensure that suitable approaches are adopted.64

48. A University of Melbourne Report highlighted, there is a ‘huge disconnection’ between what the government thinks is happening and what is happening for individuals on the ground daily.65 As Dew et al. (2012) note, a person-centric approach rather than service-centric approach needs to be adopted on all levels to ensure that service delivery

    is targeted towards individuals using services in their daily lives.66 Advocacy

organisations are key to enabling individuals with disabilities to identify their needs and lobby for service improvement.67 Our organisations highlight the importance for individuals to have access to resources and support them through advocacy to be able to build their self-advocacy skills.

49. Advantages  of  co-design  include  services  focusing on  the needs of  users and

improvements  in reducing  disability  barriers and  creating  equality.68 However,

VICRAN maintains that the co-design process should be meaningful and engage with

64Claire Quilliam, Amie O’Shea, Nadine Holgate, Laura Alston, ‘Starting with us: Imagining relational, co­ designed policy approaches to improve healthcare access for rural people with disability’ (2022) Australian

Journal ofRural Health

65 Deborah Warr, Helen Dickson, Sue Olney, Jen Hargrave, Amber Karanikolas, Vasiliky Kasidis, Georgia

Katsikis, Jasmine Ozge, Dave Peters, Jacinta Wheeler and Michelle Wilcox, ‘Choice, control and the NDIS’ (Report, 201 7)

66 Angela Dew, Kim Bulkeley, Craig Veitch, Anita Bundy, Gisselle Gallego, Michelle Lincoln, Jennie Brentall

& Scott Griffiths, ‘Addressing the barriers to accessing therapy services in rural and remote areas’ (2013) 35(18)

Disability and Rehabilitation

67 World Health Organisation, World Report on Disability (Report, 2011) 68 Ibid.

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individual participants instead of being a checklist exercise to tick a box. In addition, it is vital that individuals are provided with the tools and assistance necessary to be able to engage in the co-design process for this to be effective.

Localised approaches

a. Benefits of localised approaches/models 50. VICRAN members have observed the importance of relationships between health professionals working within the rural and regional disability sector and individuals accessing these services. Place focused approaches recognise this and engage with communities to understand how the design and delivery of these activities can best meet their needs. 69 Knowledge of the local community reduces the time required to identify the needs of community members and allows for the develop plans in response to the community’s needs as trust is already established. This localised knowledge prevents vulnerable members of the community from slipping between the cracks due to not having awareness of the existence of services or having difficulty accessing services as local organisations can engage in community outreach as they are on the ground. 70 Additionally, the personalised relationships and close geographic proximity allows local organisations to be able to check in with vulnerable community members to ensure that they are adequately supported. A centralised approach does not achieve this.

51. Orthodox approaches have failed to reduce inequalities and prevent problems resulting in the need for place-based approaches to address broader issues that impact individuals at the community level. 71

Face to face advocacy

52. VICRAN members have observed the ability for face-to-face advocacy to help connect people to be able to speak their truth and to stand up for themselves when their rights have been infringed. There is significant literature that attests to the benefits of social support on the physical and mental health of communities.72 The social support provided through face-to-face relationships ensures that community members feel cared for and listened to in contrast to indirect support mechanisms. Our organisations have observed that individuals often do not know who to ask or talk to when they are experiencing difficulties with the NDIS or individual service providers and rely on face­ to-face advocacy to facilitate connections to the right complaints process or appeals pathway.

53. Advocacy organisations are able to ‘step-in’ to assist individuals when other services 69 Department of Premier and Cabinet, A framework for place-based approaches, (Report, 2020) 70 Royal Children’s Hospital, ‘Place-based approaches to supporting children and families’ (2011) 23 Centre for

Community Child Health

71 Royal Children’s Hospital, ‘Place-based approaches to supporting children and families’ (2011) 23 Centre for

Community Child Health

72 Debra Umberson, Jennifer Karas Montez, ‘Social Relationships and Health’, (2010) 51(1) Journal of Health

and Social Behaviour

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are not accessible or involve complex processes to engage with. The cost of engaging services has been observed to be a large barrier for individuals accessing assistance when necessary. For individuals wishing to make a complaint or commence a case against a service provider, the costs involved in engaging lawyers and the cost of making an application to VCAT are key barriers to accessing justice. In addition, the waiting time for assistance from VLA is often significant.

54. It is vital that advocacy organisations are able to provide free services to individuals as without advocacy services, participants would be required to use their support

coordination funding to assist them.

55. Our organisations have observed difficulties faced by individuals who require support in order to utilise their NDIS package to engage with necessary supports. There is a need for face to face advocacy services to ensure that individuals can access supports when their support coordination or LAC support breaks down. Without this face to face advocacy there is a significant risk that there will continue to be a lack of appropriate safeguards.

Conclusion:

VICRAN encourages the Australian government to make long-term commitments to funding disability advocacy organisations to provide face-to-face advocacy to ensure that rural and regional Australians living with a disability have access to appropriate services and can seek help when necessary. The unique challenges faced by individuals living with a disability in rural and regional areas require localised support to be available to NDIS participants rather than a centralised system or organisation. As we have identified there is a strong need for co­ design to occur to ensure that the NDIS system can cater for the needs of individuals with a disability. This must be meaningful co-design and engagement as opposed to formulaic or standard consultations.

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