Submission to Joint Standing Committee on National Disability Insurance Scheme
June 2020
Ethnic Disability Advocacy Centre
320 Rokeby Road,
Subiaco WA 6008
Website: http://www.edac.org.au
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BACKGROUND
The Ethnic Disability Advocacy Centre (EDAC) is the peak advocacy organisation in WA for people with disabilities from culturally and linguistically diverse backgrounds (CaLD). EDAC aims to safeguard the rights of people with disabilities from culturally and linguistically diverse backgrounds (CaLD) and their families. EDAC provides individual and systemic advocacy services for people with all types of disability including physical, sensory, intellectual and psychiatric conditions. EDAC maintains services from offices located in the metropolitan area and also operates regional services in Peel, Kimberley and Pilbara.
This submission specifically highlights issues impacting on people from a culturally and linguistically diverse background. It also highlights issues facing the Aboriginal and Torres Strait Islander communities in rural and remote areas.
Around 30% of the Australian population is born overseas but the CaLD participation rate in the NDIS is comparatively low. According to the NDIS as of 30 June 2019, there were 24,023 CALD plan recipients making up 8.4% of all scheme participants. The last census figures indicate WA has the highest percentage (35 %) of people born overseas. There is a strong need for the NDIA to build on the priority areas as set out in the NDIA CaLD Strategy 2018 and increase the engagement with CaLD communities and to continue to enhance cultural competency within the organisation and its partners.
Use of Interpreters:
EDAC continues to find that although the use of interpreters is available to the NDIA and registered providers they are not always utilised as they should be. It is imperative that interpreters are used in planning and implementation process. Local Area Coordinators (LACs) who speak same language as client are often used by Partner In The Community (PITC) agencies, rather than accredited interpreters being booked for a pre- planning/ planning meeting. A bilingual LAC cannot be independent in the planning process. Often an assumption is made that an interpreter is not needed because client seems ok with English or has a friend or family member who will provide that support. The PITC’s decision not to use accredited interpreters for planning meetings has resulted in an increased volume of referrals to our service for plan reviews. Without exception all reviewed plans (where EDAC provided advocacy) have resulted in increased supports for the client as a result of the review.
CaLD families are often confused by NDIS terminology and LACs/planners don’t recognise the level of difficulty the clients face navigating the NDIS system, which they find confusing and unclear. A significant proportion of our clients have no idea about budgets, portals, and the differences between the NDIS and the medical system. This is particularly true of the emerging CaLD communities where there is a lack of established links to the mainstream. Some clients are illiterate in both their first language and English, and yet are given pamphlets for service providers that they cannot read, and advised by the PITC agency that they ( the client) need to contact the service provider independently, as the PITC agency is unable to assist as they need to remain impartial. This is especially so for clients that have not been provided with Support Coordination.
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Case History 1: Two planners from PITC attended a planning meeting for client, one of whom spoke the client’s and carer’s language. Fortunately, staff from other support agency had booked an accredited interpreter for the meeting. After the accredited interpreter left, the PIC staff member, who spoke the family’s language advised client’s carer that he should lower his expectations in relation to the plan.
Case History 2: Client is vision impaired and arrived in Australia just over 3 years ago. She was referred to EDAC when she presented at hospital to give birth to her second child. Prior to referral to EDAC, she had no knowledge that there were of services that could support her. Due to her disability and current lack of support, client does not leave the house and is socially isolated. Client was not offered an accredited interpreter at the initial pre- planning meeting with the PITC, client was asked to bring “somebody that speaks English”. Advocacy was required to ensure an accredited interpreter was booked for the implementation meeting. Neither client nor advocate received confirmation as to whether an interpreter was booked until the date of the meeting. Local Area Coordinator’s explanation was that they did not book an interpreter because client did not ask for one.
Case History 3: EDAC attended a planning meeting where advocate was informed there would be an interpreter. On arrival advocate was told the LAC speaks the same language so the interpretation would be no problem. EDAC informed the client that she had the right to request a qualified interpreter who would be independent. She agreed to go on with the meeting but indicated afterwards that it was difficult for her to say no to the use of the LAC because it could be seen as disrespectful in cultural terms.
When an interpreter is required for planning meeting, extra time is required for interpretation in the planning process. Often after the standardised questions are asked to the client or carer, there is no time to discuss client goals adequately. There appears to be no understanding that interpreting involves more than strict word for word translation. Some languages may not have specific words or terms for certain medical conditions or therapies etc and so the interpreter may then have to further explain these concepts to the client. There is also a need to keep in mind that not all the questions asked by the LAC in a planning meeting are relevant to the client’s or carer’s cultural environment and require further explanation by the interpreter so that the client/ carer can understand the context of the question.
Cultural competency:
There are many different cultures within the CaLD communities and cultural competency is built with knowledge and experience. There is no doubt that there is a lack of appropriately trained staff and the NDIA needs to address this as a priority. Often the lack of cultural knowledge manifests itself in very simple practical ways.
Example 1: A planner thought a Burmese client was Chinese and booked an interpreter for the wrong language. The planning meeting needed to be rescheduled; the delay meant the client had no access to supports.
Example 2: assumptions are made that all Muslims speak Arabic, all people from Myanmar speak Burmese.
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Example 3: Carer asked can the client hold a knife and fork when these are not the implements used in their culture.
Regional and Remote Communities:
There have been multiple issues for clients living in remote communities. This cohort of clients can often be difficult to contact by phone or in other ways. To address these difficulties, Regional Advocacy Officers are required to visit remote communities to see clients. Planners do not always have a good understanding of remote communities, how they function, or cultural issues that may impact on being able to contact client.
Even if clients have plans, there are barriers to implementation due to a lack of services, or lack of consistency of services in the area. Even though there are a number of service providers claiming to be providers in the area, it is very rare that our clients gain access to supports in a timely or consistent manner.
Case History 4: Vulnerable client living in a remote community; carer no longer able to provide support to client. Neither client or carer are contactable by phone. Multiple agencies (child protection, disability services, mental health, education) involved in supporting client and family. Specialist Planner requested contact details for carer and advised that the plan could not progress, until carer had been contacted. When advised by the advocate that carer did not have a phone, Specialist planner suggested that Advocacy Officer was putting “road blocks” in the way (of making contact with carer). Advocacy Officer explained that there were “no road blocks” and that it was is not unusual for our clients in regional areas (or the metropolitan area for that matter) not to have phones. Where necessary staff do visits to communities or sometimes need to look for their clients in the public places that they know their clients’ access on a regular basis. Specialist planner did not appear to understand the complexities of the community, or the relevant protocols involved.
Case History 5: Client with intellectual disability, released from jail and re- integrated into remote community. NDIS plan approved in February 2019, however there were still no services available to the client by June 2019, despite a services provider being selected and agreeing to provided supports. Carer decided she would no longer seek access to NDIS supports due to the inconsistency with getting staff. Service provider’s response, when questioned about the lengthy delay in providing service to the client: “it has taken this long to get supports in place” (5 months). Supports were supposed to be in place in February; “but no fault of anyone, agencies just did not have people on board, finally everything is okay”. As a result of tardiness and lack of consistency with providers and support staff, carer decided to no longer seek NDIS supports. This has resulted in a client not being able to access the supports required.
Meeting access requirements sometimes presents difficulty for our clients in regional and remote communities. Providing identity documents and difficulties in obtaining medical reports to include in ACCESS requests are ongoing issues. Clients often do not have these records and are required to access the required information through Freedom of Information (health/diagnostic information) and attending the local Court House (if they can get there) for a copy of the birth certificate, assuming of course their birth was registered. This results in lengthy delays in relation to gaining access to the scheme
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Case History 6: A client based in northern WA was being assisted with a review of decision against his eligibility for the NDIS. Client complained that it was so difficult to obtain medical documentation when living in rural and remote areas. Medical personnel e.g. specialists practise in these areas on a roster basis only. Client was sent Supporting Evidence forms from the NDIS as part of the application process but could not get them filled out. More specific documentation could only be provided in the review process.
Case History 7: Freedom of Information allowing access to client medical records forms a critical part in the NDIS Access process. Proving the disability with qualitative medical information not only contributed to the success of an NDIS Access application but also provided the information required to achieve the best possible outcomes for the client’s subsequent support planning phase.
At the time of initial contact, the client was living in a remote community of Western Australia. The client was first diagnosed with psychosis whilst in the prison system. At the time of diagnosis, the client had been in and out of detention centres and was a threat to both himself and potentially others; client was on a Community Treatment Order. The initial information was provided to NDIA, by the local mental health service treating client; however, it was considered inadequate documentation for NDIS access. There were no other client supports in place for the client at the time. Medical records were scattered and applied for from no less than six medical facilities that had treated the client. Client application for medical records through the Freedom of Information process, with the support of the Regional Advocacy Officer confirmed client impairment. These medical records formed the basis of the client’s application for a review; the client’s review was successful. All available medical evidence provided was used in the NDIS Access and planning process.
The medical information was conclusive in its diagnosis; however it should be noted that the initial access request was denied on the grounds that section 24(1)(b) of the NDIS Act were “not considered to be met in that the impairment was not considered to have been proven as permanent, or likely to be permanent.” As Paranoid Schizophrenia is an enduring mental illness, it was a disappointing outcome (access denied) at the time. However, having the decision reviewed was successful.
Consent:
EDAC is funded under the National Disability Advocacy Program (NDAP) to provide independent advocacy support to assist clients with NDIS appeals and reviews. Just under a year ago the NDIA were not accepting client consent forms from various agencies and it was a national issue. It was resolved at the time by the Access and Planning Strategy Branch within the NDIA. However, our Advocacy Officers report recent cases where consent has been an issue either with the NDIA or a PIC.
When Advocacy Officers have tried to follow up on review cases with the NDIA it has not been uncommon to receive replies like “Thank you for contacting the National Disability Insurance Agency (NDIA). We have received your enquiry regarding review application. The Agency is bound by the Privacy Act 1988 and the National Disability Insurance Scheme Act 2013, under these Acts, the Agency is not authorised to discuss whether the person is or is not known to the Agency or disclose
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any personal information without consent. National Contact Centre Email Enquiry Team “. Other email replies have stated “The original consent form was incomplete; can you please send in another form. “
Case history 8: A client who was denied access to the NDIS (7year old with language developmental disorder). A review was lodged, and it was subsequently successful and access to NDIs was granted. However, neither the community partner or the NDIA informed EDAC of this, and a planning meeting was held over the phone with the carer without the Advocacy Officer being notified. The carer did not ask for the Advocacy Officer to be included as they did not realise the PITC provider was connected to the NDIS.
Case history 9: The client is an18 year old with Intellectual Disability. The client’s NDIS review took nearly a year to be processed despite making several phone calls to the NDIA who gave vague responses. The subsequent review meeting was held without the Advocacy Officer or other support persons being notified; family did not have capacity to ask for anyone to be informed. The family had previously given consent to EDAC Advocacy Officer to be a correspondence nominee for them during an earlier implementation meeting, yet the Advocacy Officer was never contacted by the NDIA.
Case history 10: An Advocacy Officer was contacted by phone 20 minutes prior to planning meeting being conducted by phone by Local Coordinator, despite having all the necessary consent forms and contact details registered to be contacted. Client was a newly arrived refugee(child). Carer reported that “someone had phoned her”, but she did not connect the phone call with a planning meeting and was at a hospital appointment with her child when the planning meeting took place.
Translation of NDIS plans:
EDAC finds this a service not generally offered unless it is requested. EDAC has found that it is not common knowledge amongst NDIA or PITC staff that plans can be made available to clients/carers in their language. To have something as complicated as an NDIS plan in your own language is of immense benefit to CaLD clients and /or their carers. If a client or their primary carer/ decision maker does not fully understand the NDIS plan, it is difficult for them to make informed choices about what options will be the best for their circumstances. It is also of concern that there is little awareness amongst providers (NDIA and PITC agencies) that there is a difference between interpreting and translating, an assumption is made that an interpreter can read out the plan to the client and they will understand. It should standard practice for NDIA and PITC agencies to ask CaLD clients (or their carers) if they need the plan translated.
Case history 11: Carer requested her child’s plan to be translated into her language. Advocacy Officer was advised by planner “I had a look at the guidance around having the plan translated for the carer. Since ESL for her is not related to (child’s) disability, we are unable to fund this “.
How can the carer appropriately engage with service providers to meet her child’s needs if she does not have a plan she can read and or understand?
Capacity and access to technology:
Many of EDAC’s client base do not have access to computers or the skills to use one. They cannot use the NDIS portal, send emails or go to the website as a resource. There seems to be an
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expectation that everyone uses technology, or everyone can learn these skills in a very short period of time. Many of our clients with refugee backgrounds have never been to school and do not have the prerequisite literacy skills either in their own language or English to successfully navigate their way through these processes. Many of them have lived for years in camps with not even the basic amenities and require extra support for an extended period of time.
Support Co-ordination:
Support co-ordination not being included as a support in clients plans is a recurring issue. EDAC believes it is vital that CaLD clients (such as clients from refugee backgrounds, or clients/ carers with low-English proficiency), who require a significant and long-term level of support in relation to accessing services and implementing plans be provided with Support Coordination. The majority of EDAC clients do not understand the systems they are expected to navigate. Clients are often given minimal support from the PITC Local Area Coordinators. Clients are missing out on crucial services as they (or their carers) do not know how to link up with appropriate service providers. In cases where support co-ordination was given it has been severely underfunded.
Case history 12: A single parent (Humanitarian Entrant) with 6 children, 3 of them with autism. Only one of the children was provided with Support Coordination in their NDIS plan, with an assumed expectation that the Support Coordination would be “ bundled” and used for all three children, and that the level of funding allocated to one child would be sufficient to coordinate supports for all three children, who had significantly different support needs.
There has been a trend for either a significant reduction in funding for support co-ordination or none provided at all. Many service providers in WA ceased to provide it as a service because it was seen as not economically viable. This trend followed the introduction of the Local Area Coordinators who were supposed to support participants and their families to understand the plans, use myplace portals etc and to connect them to providers. Our understanding is that Support Coordination would be available in situations where participants needed “more help” or there was no PITC in the area. However, clients report they are given a list of contact numbers by the Local Area Coordinator (PITC), but no assistance in linking to services, the reason given was “the need to remain impartial”.
Local Area Coordinator role:
The role of the LAC remains unclear. There is a generic job role and in WA there are three PITC providers but there are differences in what individual LACs will do. The EDAC experience to date is that it very much depends on the individual LAC as to what they will do.
Case history 13: Client presented with concerns about self-managing a plan and that there was no Support Coordination provided in the plan. The client has no English language, no knowledge of services and/or how to access them, limited family support and no other social support networks available assist her. Local Area Coordinator advised client that family members who work full time, could provide this support coordination in an informal capacity in their lunch breaks. Local Coordinator suggested to client that if Support Coordination was required, perhaps client needed an official Guardian appointed. When Advocacy Officer challenged to accuracy of that statement LAC threatened to terminate the meeting at that point. LAC advised client that if she requested a review, she risks “losing some funding from the plan“. Client asked whether money could be taken all together if she asks for review, the answer was that someone else (NDIA Staff) will decide about it,
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not the Local Area Coordinator. Client decided not to submit the review regardless of the fact that she did not believe that the plan adequately met her needs.
Case history 14: EDAC advocated strongly for support coordination to be provided to a recently arrived family of Syrian origin, mother, father and 4 children - 3 of them with disabilities. The three NDIS plans did not include Support Coordination. The family required practical help with various items like accessing incontinent products. The LAC was contacted but the family were informed this was not their job.
It should be noted here that currently EDAC are experiencing cases where our clients who missed out on Support Coordination have suffered during the WA COVID 19 lockdown with being unable to contact anyone to explain the changes brought on because of the pandemic.
Thank you for this opportunity for EDAC to provide our experience in supporting clients and their families navigate the NDIS.
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