SUB.001.03193_01_0001
Victorian Arabic Social Services
Submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with
Disability
About VASS:
Victorian Arabic Social Services (VASS) is a state-wide key service provider, founded in 1986, with specialist expertise and knowledge in working with multicultural communities, particularly Arabic Speaking Background (ASB) communities. The work undertaken by VASS is underpinned by community development principles which aim to develop the citizenship status of disadvantaged members of ASB communities. VASS provides a range of services, from youth services, family services, gambling support services and aged care and disability services (NDIS and HACC PYP). The majority of VASS’s staff, and all of the Senior Management, are from ASB communities.
VASS appreciates the opportunity to give evidence to this Royal Commission, and commends the Commission on its recognition of the particular needs of CALO communities, and the impact of intersectionality.
Overview:
This submission will focus on the experiences of people of ASB, including Assyrian and Chaldean, backgrounds in particular, noting that there are both similarities with other CALO groups, and great diversity between different CALO groups, and within ASB communities. VASS’s submission is based on our experience of working in the sector, including feedback from clients and community members.
For people of ASB with disabilities, like other CALO groups, there are a number of factors that contribute to, and increase vulnerability to, experiences of violence, abuse, neglect and exploitation. These include language barriers, a lack of knowledge of the services available and their rights in relation to these, mistrust of government services, financial hardship and cultural barriers such as stigma and shame associated with both having a disability and accessing services. Often, these factors interact to compound experiences of violence, abuse, neglect and exploitation.
In VASS’s experience, many of the experiences of violence, abuse, neglect and exploitation for people of ASB are structural, systemic, societal or cultural, rather than individual acts. Discrimination is also a key feature of the experiences of ASB PWD, as there are some systemic structures that impact people of CALO backgrounds, particularly those who are not proficient in English, more so than those who are native English speakers.
Experiences of violence, abuse, neglect and exploitation
Accessing Disability-related Supports and Services
People with disability (PWD) of ASB face multiple barriers to accessing services. This results in a lack of engagement with necessary services, which can have devastating impact on quality of life, and as the Royal Commission notes in the Issues Paper on the experiences of CALO PWD, can amount to neglect. For some, they are not eligible to access certain disability services at all due to eligibility limits, such as the residence requirements of the NDIS. This is discriminatory and unfair. Many people of ASB are unaware of the disability services available, and how to access these. This can be
SUB.001.03193_01_0002
due to different disability services landscapes in their country of origin (AMPARO, 2016; Heneker et. al., 2017).
Even when there is some understanding of the services and supports available, the processes to access these are so complicated and time consuming that many people of ASB do not attempt to navigate this, or experience failed attempts and give up trying. Complex forms and criteria are made even more difficult if English is not the first language. The systems in place to access services can be discriminatory to people who are not literate in English. The access process for the NOIS for example, has no translated Access Request Forms. The process is even more daunting for those from migrant and refugee backgrounds particularly, who may have hesitancy about giving their details to government-related bodies (AMPARO, 2016).
Stigma and shame are also large barriers to accessing essential supports and services for ASB PWO. In the ASB community, there is stigma related to having a disability, and it is common for families to keep family members with disability isolated from the broader community. Part of this stigma relates to a belief that the condition may be genetic, and so will harm marriage prospects if it is known a family member has a disability. This can lead to a reduction in engaging in the assessment process because this will identify the family as needing disability supports or services, particularly when there are requirements for input from multiple health professionals, as with the NOIS. Even when there is less shame associated with the disability itself, there is also stigma associated with accessing supports for people of ASB, because of a strong belief in the importance of family caring obligations. Family members do not want to be seen to be avoiding their responsibilities. This reluctance relates to both services such as in-home care, as well as allied health and other therapies, and even essential equipment. VASS has worked with one client who needed a walking aid, but was too fearful of the stigma attached to this, and so physically lent on their carer for support to move about in the community. This was of course very detrimental to the health of both the PWO and their carer, and also caused a great amount of stress for the carer. This reluctance to access services can amount to neglect when the PWO is dependent on a carer or family member to access services, and that person refuses to do so because of shame or stigma.*
People of CALO backgrounds, including ASB, are more likely than people from the dominant culture to experience financial hardship (VCOSS, 2018). This results in PWO not accessing the services, treatment or equipment they require, impacting quality of life and in some cases worsening their condition. Financial hardship can be a barrier to the access process itself, when multiple appointments with health professionals are required to obtain relevant evidence. Financial hardship can also combine with a lack of knowledge of the services available to lead to reduced utilisation of services and supports. Many of VASS’s clients, or their carers, have not accessed services, or other supports such as equipment, because of the perceived cost, not realising that they would be eligible for government funding for these supports. Severe financial hardship also means that for some families, disability supports may not be the priority. For example, VASS has had clients who are eligible for Home and Community Care, though believe it is pointless to begin the assessment process because they are faced with the prospect of homelessness.
These various access issues, seen in practice by VASS, are borne out by the evidence. For example, the proportionately lower percentage of people of CALO backgrounds accessing the NOIS (ABS, 2022; NOIA, 2022).
SUB.001.03193_01_0003
Engagement with services
The challenges and barriers outlined above also relate to how people of ASB engage with disability services, and can lead to neglect, discrimination and exploitation.
The language barrier is a further site of discrimination, leading to neglect and inappropriate care of people of ASB. While a lack of translated materials impacts service access, the language barrier can also impact service provision. Use (or otherwise) of interpreters is a key issue that impacts quality of care in assessment, planning and service provision of disability services. VASS has experienced this particularly in relation to the NDIS. While the Translating and Interpreting Service (TIS) is available to NDIS participants on the planning and review processes, these are often not used, with LACs relying instead on informal interpreters such as family members, or staff of ethno-specific service providers such as VASS. This can compromise the privacy of the participant, may not be of the correct standard, and can lead to an incorrect identification of needs, and therefore an inaccurate NDIS Plan that does not meet the participant’s needs and goals. Similarly, many registered NDIS providers, who are eligible to use TIS services with clients, do not do so. VASS has worked with allied health providers, for example, who request a bilingual support worker, or even a Support Coordinator, be present in sessions with the participant, purely for language support, not because of their disability related needs. This means the participant is forced to use other supports in their NDIS Plan in addition to the allied health supports, for that session. These practices are discriminatory and unfairly impact PWD of non-English speaking backgrounds more than their English-proficient counterparts. Even when interpreters are used, this can present issues as they can misinterpret information. VASS’s experience of this is backed by research that suggests that interpreters may be unfamiliar with disability-related terminology and so make mistakes in their work (AMPARO, 2016). VASS also believes that further training in professionalism is needed for interpreters, to address instances of not literally translating conversations but adding their own points. Again, poor interpretation can lead to a misidentification of needs, or further obfuscating the clients’ understanding of the services, which can lead to not receiving required services.
While choice and control is a laudable goal of the NDIS, this can negatively impact ASB PWD who lack understanding of the system and services available. For example, VASS has worked with many NDIS participants whose NDIS Plans are not appropriate to their needs and goals. While this is partly because of the language issues outlined above, much of the time VASS has found that participants were not aware of the types of supports and services they could ask for. Lack of knowledge of the system and financial hardship also impact ASB PWD’s engagement with services once linked. For example, clients or their carers/decision makers sometimes do not utilise the services in an NDIS Plan, believing that they are saving money that they could spend on other things if necessary, not realising that these funds can only be spent on disability-related supports.*
People of ASB, as with other CALO backgrounds, often do not have knowledge of their rights in relation to disability services (AMPARO, 2016). This, especially when combined with a lack of proficiency in English, and a lack of knowledge of the disability service system in Australia, can leave them open to exploitation by unscrupulous service providers. This has been especially prominent with the advent of the NDIS and open-market style systems. VASS has supported many people of ASB who have been exploited by NDIS providers, ranging from not receiving a copy of their Service Agreement (in any language), to being charged for more services than they are receiving, to not receiving any services at all, while being charged to the full extent of their Plan. While some clients have been brave enough to speak up to a trusted service such as VASS, many do not know that they can complain, or where or how to do this. Others have been threatened by the provider that the client will get in trouble, or not be allowed future services, if they speak up. This is a gross violation
SUB.001.03193_01_0004
of their rights, and constitutes financial and in many cases psychological abuse, as well as neglect. While PWD of all backgrounds can be exploited by such providers, people of CALO backgrounds are especially vulnerable. VASS is aware that the Labor government is committed to ‘cracking down’ on fraudulent NDIS providers, and urges them to consider the needs of CALO clients as particular targets in any efforts to address this.
*VASS does not wish to imply that carers are deliberately mistreating the person they are caring for. In most cases, the carers are working incredibly hard, and are themselves overworked because of the barriers to accessing services and supports. Carers are victims of cultural and structural factors as much as the PWD.
Good Practice Examples
The following are some examples of good practice that either protect ASB PWD from violence, abuse, neglect or exploitation directly, or that could be drawn upon to do so.
There are many previous and existing programs that could be expanded or replicated to address the issues outlined above. The Access and Support program, for example, involves provision of information and support to a variety of diverse groups, including people of CALO backgrounds, who face barriers to accessing HACC PYP (disability) services in Victoria. Access and Support workers provide culturally appropriate information to individuals about services, the benefits of using them, and address any concerns the individual may have. Access and Support workers also support the individual through the assessment and initial engagement process. Access and Support workers also work with other service providers, educating them about how best to work with the target group in question. Importantly, funding is given to services with specialist expertise in working with their particular target group, including many ethno-specifics, such as VASS, who is funded to work specifically with the ASB community. This is essential because staff at these organisations have the skills, knowledge (including language and cultural knowledge), but most importantly the trust of that community, that enable them to engage with individuals who otherwise wouldn’t.
There are several examples of good practice in relation to community education initiatives targeting CALO communities. Key to all are the use of culturally and linguistically appropriate methods, tailored to each community. While each community will have their own preferred modes of communication and information provision, common methods include community/ ethnic radio, community newspapers, dissemination via community leaders, religious, cultural and ethno organisations of materials that are not only in language, but use appropriate terminology (literal translations are often inappropriate).
The Ethnic Communities’ Council of Victoria (ECCV) has also worked on numerous programs that educate CALO communities and/or increase their engagement with services in areas of stigma, such as elder abuse. In these, ECCV works collaboratively with a small handful of ethno-specifics and the related peak body, such as Senior Rights Victoria, to train bilingual workers from the ethno-specifics, who then deliver community education sessions in community languages to their community group. VASS has worked with ECCV on a number of these, and has seen it increase people of AS B’s utilisation of services such as Palliative Care and Dementia Australia.
SUB.001.03193_01_0005
Recommendations:
Expand the Access and Support Program
Expand the Access and Support program to provide more funding for activities to support CALO PWD to engage with all disability supports and services. The organisations currently funded to provide these services, such as ethno-specifics like VASS, already have the knowledge, skills and importantly, trust of the communities they support. This program will help individuals from CALO backgrounds access and continue to stay engaged with the disability supports relevant to them, and reduce many of the access issues, but particularly stigma and shame, as culturally appropriate bilingual workers can address community members concerns on a deep, individual level. This is currently funded by the Victorian government for people under 65 years in Victoria, but if jointly funded by State and Federal governments could more easily reach national programs such as the NDIS.
Deliver community-wide education programs, tailored to specific CALO communities
As a lack of knowledge of services available has such detrimental impacts for CALO PWDs, the Federal government should create specific education programs about the range of services available, and their rights in relation to these are needed. These should be tailored to different CALO groups, utilising methods that are culturally and linguistically appropriate, such as in language materials on ethnic community radio, community newspapers, via community leaders and cultural and religious organisations. This could be part of the Access and Support role, or its own program, targeting CALO communities.
Expand independent advocacy services, tailored to CALO communities
There needs to be greater investment from the Federal government into advocacy services for PWDs and their families. There also needs to be more education for CALO communities in how to access these. This would enable support for PWD to assert and defend their rights when faced with situations of violence, abuse, neglect, exploitation and discrimination.
Require greater cultural responsiveness and use of interpreters by disability service providers, the NOIA and LACs
While cultural responsiveness is mentioned in the NDIS Practice Standards and Quality Indicators, this is not given the same prominence it has in the Aged Care Quality Standards. There is also less emphasis on this in materials by the NDIS Commission compared to the Aged Care Quality and Safety Commission. Increasing the obligations of service providers to provide culturally competent supports would reduce the discrimination and inappropriate care given to people of CALO backgrounds engaging with the NDIS. Requiring, and more closely monitoring, the use of interpreters would also improve these groups’ experiences. Providing more training to TIS interpreters in disability-related terminology could also improve outcomes.
SUB.001.03193_01_0006
Monitoring and de-registering unscrupulous providers
As noted above, while ‘cracking down’ on ‘dodgy providers’ in the NDIS is already a commitment of the Labor government, VASS recommends that there is particular attention paid to the targeting of CALD communities by these providers.
Thank you once again for the opportunity to respond. For further information, please do not hesitate to contact:
Evelyn Dowling
NDIS and HACC/CHSP Coordinator, VASS
Evelyn.dowling @vass.org.au
References:
AMPARO Advocacy Inc., 2016, ‘The NDIS and Culturally and Linguistically Diverse Communities: Aiming high for equitable access in Queensland’.
Australian Bureau of Statistics, 2022, ‘Profile of people with a core need for assistance in Australia’, accessed 22/12/2022, < https://www.abs.gov.au/articles/profile-people-core-need-assistance australia>
Heneker, K.J., Zizzo, G., Awata, M., Goodwin-Smith., |. (2017), ‘Engaging Culturally and Linguistically
Diverse Communities in the National Disability Insurance Scheme’, Adelaide: Australian Centre for
Community Services Research, Flinders University, Adelaide.
National Disability Insurance Agency, 2022, ‘NDIS Quarterly Report to Disability Ministers: 30
September 2022’, National Disability Insurance Agency, accessed 22/12/2022, < https: //www.ndis.gov.au/about-us/publications/quarterly-reports>
Victorian Council of Social Service, 2018, Celebrating and Supporting Cultural Diversity,
https://vcoss.org.au/analysis/2018/09/celebrating-and-supporting-cultural-diversity/