SUBMISSION TO THE JOINT STANDING
COMMITTEE ON THE NDIS
NDIS PARTICIPANT EXPERIENCE IN RURAL,
REGIONAL AND REMOTE AUSTRALIA
ADELAIDE OFFICE RIVERLAND SOUTH EAST
411 Henley Beach Rd Brooklyn Park SA 2a Ahern Street Berri SA 5343 PO Box 1210 Mount Gambier SA 5290
5032 PO Box 868 Berri SA 5343 Phone: 08 8351 9500
PO Box 411 Brooklyn Park SA 5032 Phone: 08 8351 9500 Email: administration@dras.com.au
Acknowledgement of Country
The Disability Rights Advocacy Service Inc acknowledges that this submission was completed on Kaurna Land. We pay our respects to Elders past, present and emerging. We recognise the continuing relationship with the lands and seas and connection to culture.
Kaurna Miyurna yaitya yarta-mathanya Wama Tarntanyaku, parnaku yailtya, parnaku tapa puru purruna. Kaurna Miyurna ithu yailtya purruna, yarta kuma puru martinthi, puru warri-apinthi, puru tangka martulayinthi.
ADELAIDE OFFICE RIVERLAND SOUTH EAST
411 Henley Beach Rd Brooklyn Park SA 2a Ahern Street Berri SA 5343 PO Box 1210 Mount Gambier SA 5290
5032 PO Box 868 Berri SA 5343 Phone: 08 8351 9500
PO Box 411 Brooklyn Park SA 5032 Phone: 08 8351 9500 Email: administration@dras.com.au
Background
Disability Rights Advocacy Service (DRAS) is a community organisation that is run by our members and our Board, which is made up of people with a disability. DRAS is part of a national network of disability advocacy organisations funded by the Australian Government Department of Social Services to provide individual advocacy and NDIS appeals support, individual capacity-building and systemic advocacy for persons with disability.
What we do
Our advocates listen to people with a disability and learn from them, so that we can work alongside them to promote and defend their human rights. It means helping people with disability to get a fair go. It means helping people with a disability to enjoy all the things they are entitled to – all the things a person who doesn’t have a disability can access.
Our locations
Disability Rights Advocacy Service has three office locations in South Australia:
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Our Brooklyn Park office represents people who reside within greater metropolitan Adelaide, Mount Barker, Adelaide Hills and Murray Bridge.
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Based in Mount Gambier, our South-East service assists people throughout the South-East and Coorong region.
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People living within the Riverland region can access our Riverland office, which is based in the township of Berri.
Our Mission
Safeguarding and promoting the rights and interests of people with a disability, their families and carers. We do this through our four governing principles:
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People with disabilities have the same rights as other members of the Australian community.
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People with a disability should be able to maintain and develop their culture without prejudice or disadvantage and should be encouraged to understand and embrace other cultures.
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People with a disability should be able to receive services necessary to enable them to achieve their maximum potential as members of the community.
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People with a disability are entitled to participate in decisions that affect their lives and to receive services in a manner that results in the least restriction of their rights and
opportunities.
ADELAIDE OFFICE RIVERLAND SOUTH EAST
411 Henley Beach Rd Brooklyn Park SA 2a Ahern Street Berri SA 5343 PO Box 1210 Mount Gambier SA 5290
5032 PO Box 868 Berri SA 5343 Phone: 08 8351 9500
PO Box 411 Brooklyn Park SA 5032 Phone: 08 8351 9500 Email: administration@dras.com.au
The experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews
Application stage
When regional clients present to DRAS to request help at the application stage is it because are facing barriers in finalising an NDIS application because:
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They face difficulty in completing the NDIS form and getting the medical evidence required;
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There is less access to primary healthcare providers such as general practitioners and less choices for healthcare specialists who would be able to assess a patient’s eligibility for the NDIS;
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Healthcare professionals are not always NDIS savvy in helping their patients to understand what is required, as there is little awareness, education or training on the NDIS Access criteria;
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Living in a regional area means that there is less access to allied health professionals and medical practitioners in general, meaning that there is less opportunity for individuals to get the medical assessment or treatment that they need, which impacts on their health and well-being, but also means that they have not built up the evidence required for an NDIS application;
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Often allied health professionals / medical practitioners will be ‘visiting’ meaning that they are only in the area quarterly;
• Getting an assessment can be a financial and logistical challenge because attending
appointments and getting a report costs thousands of dollars, which is compounded by living in a regional area, as often people will be expected to travel to the city or a regional centre (with telehealth not being an option for intensive assessments which require in-person
assessment, or medical practitioners being resistant to offering telehealth for a first
appointment);
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There is a feeling that the NDIS is too daunting to approach, people don’t know where to go or who to talk to, and they don’t have the time, energy or stress of trying to apply, particularly for people who are low socio-economic on a low wage or on income support;
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There is limited awareness of what a Local Area Coordinator is or how someone can access them;
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Often disability-specific providers do not operate in regional areas;
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People with disability are often relying on individual people in their communities going out of their way to help, such as a local library worker referring someone to an advocacy service, rather than a standard approach in health or disability services referring people to the NDIS or
a Local Area Coordinator
ADELAIDE OFFICE RIVERLAND SOUTH EAST
411 Henley Beach Rd Brooklyn Park SA 2a Ahern Street Berri SA 5343 PO Box 1210 Mount Gambier SA 5290
5032 PO Box 868 Berri SA 5343 Phone: 08 8351 9500
PO Box 411 Brooklyn Park SA 5032 Phone: 08 8351 9500 Email: administration@dras.com.au
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Please see the below case study detailing the experience of one of our clients trying to access the NDIS:
‘The client has an intellectual disability that was first diagnosed when they were
younger. However, since then they have not been engaged with any support services and had limited medical or therapy involvement. There are limited medical practitioners or specialists in their regional area and they have been told that they cannot access telehealth for a first appointment or assessment. They do not have sufficient medical evidence to apply for the NDIS as advised by their Local Area Coordinator. They have been informed that they need to get an assessment by a psychiatrist or occupational therapist for the NDIS to have better evidence to assess their eligibility. The client is from a low socio-economic background and in receipt of the Disability Support Pension. They cannot afford to self-fund any assessments, assessments are not covered by Medicare or another scheme, and there are no available community grants to apply for. The client cannot get medical evidence to demonstrate their ability for the NDIS and so they cannot successfully apply at this stage’.
NDIS Plan implementation
- There can be a lack of service providers in the NDIS participant’s area, meaning that their NDIS Plan is not able to be implemented in their location, or they feel forced to move away from their home. For example:
‘The client has lived in their current property for more than ten years and has put
significant work into making it their home, including upgrading the garden, for
themselves and their pet birds. They have requested home modifications as the property is not currently meeting their disability needs, along with 26 hour per day supports. The client’s housing provider has said they cannot fund the requested home modifications so the client has requested that this funding from the NDIA be included in their NDIS Plan. However, instead of approving funding for the home modifications, the NDIA has approved funding for Supported Independent Living (SIL), meaning that the client would be required to move away from their home and share with other NDIS participants in a 1:3 arrangement. The client would likely need to relinquish their current support workers that they are familiar with if forced to move to a SIL property. There are no appropriate properties for the client to transfer to in their area. If they had to move, they would be required to move to Adelaide or the Adelaide Hills, far from their family and current professional supports. The client is distressed that their choice and control has been taken away from them and this is impacting significantly on their emotional well-being and mental health. They are in the process of requesting a review of their NDIS Plan funding’.
ADELAIDE OFFICE RIVERLAND SOUTH EAST
411 Henley Beach Rd Brooklyn Park SA 2a Ahern Street Berri SA 5343 PO Box 1210 Mount Gambier SA 5290
5032 PO Box 868 Berri SA 5343 Phone: 08 8351 9500
PO Box 411 Brooklyn Park SA 5032 Phone: 08 8351 9500 Email: administration@dras.com.au
The availability, responsiveness, consistency and effectiveness of the NDIS in serving rural, regional and remote participants
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As was outlined in the NDIS review report, the NDIS is an oasis, with a lack of foundational community supports or primary healthcare services particularly in regional areas;
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There can be misinformation online and in service provider advertising about what the NDIS will fund, leading to misconceptions and a lack of awareness in the community;
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Carer burnout can occur due to a lack of available service providers overall, or a lack of providers having sufficient training or capacity to assist the NDIS participant if they have complex needs, alongside a lack of support in schools for children with disability, leading to exclusion or suspension;
• Carers have reported to DRAS that support services for carers are insufficient, can be
bureaucratic to access (due to stringent timelines for accessing supports and the extreme barriers for accessing services because of the level of daily care provided) and that feedback from carers is not implemented at the government level;
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People with disability and carers have raised concerns that government funding for the NDIA is not going to clients on the ground, and is rather being eaten up by service providers in administration costs and fees;
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Participants have raised that when making complaints about service providers to the NDIS Quality and Safeguards Commission, particularly about matters that may be about perceived ‘smaller’ complaints, participants feel that they are not being taken seriously, that the NDIS Commission may not get back to clients and there is no response, and no or limited follow up on complaints, and that the NDIS Commission directs the participant back to their service provider, even if the participant has already complained to their service provider and there has not been a resolution.
Participants’ choice and control over NDIS services and supports including the availability, accessibility, cost and durability of those services
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Clients have reported that choice and control does not exist where there are limited service providers, and there may not be another service provider to transfer to. There are also concerns about making a complaint about a service provider because participants are living in smaller communities so the participant is worried about their privacy being breached;
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Due to the fact that NDIS service providers operate in smaller communities, participants have reported breaches of participants professional boundaries and confidentiality, along with complaints not being actioned by individual services providers;
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Where the participant is already accessing a service provider, the service may not be right for the participant, but the participant feels that they cannot make a complaint, even anonymously,
ADELAIDE OFFICE RIVERLAND SOUTH EAST
411 Henley Beach Rd Brooklyn Park SA 2a Ahern Street Berri SA 5343 PO Box 1210 Mount Gambier SA 5290
5032 PO Box 868 Berri SA 5343 Phone: 08 8351 9500
PO Box 411 Brooklyn Park SA 5032 Phone: 08 8351 9500 Email: administration@dras.com.au
because they are living in a small community, and feel that they will be targeted unfairly, or that they will be ‘gossiped’ about;
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Support workers may not be adequately qualified or have the training or experience needed to implement the funding approved in the NDIS Plan, alongside a worker shortage in regional areas;
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Participants are reporting that they are experiencing service providers who are not always willing to accommodate to the client’s needs and facing ableism;
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Choice and control is also limited because participants or their carers feel that they have to jump through hoops to get an alternative support worker if the client feels they don’t match with an individual support worker; participants feel that this is taking away their choice about the people in their own home; another issue is that a support worker may decline to take a participant to activities that the participant would like to do;
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Participants and their carers have reported that Positive Behaviour Support Practitioners are costly, can be difficult to implement for support workers, there can be a lack of handover, and support workers do not have time to go through all of the paperwork to support the person individually unless they are regular support workers, particularly if participants are isolated without a support network;
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The need to be transported to the Adelaide CBD from a regional area if there are no service providers in the participants area is costly and time-consuming;
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NDIS service providers operate on roster-based services that are limited, which is not always sufficient for families, particularly if there are multiple children with disabilities in one
household;
- On the other hand, support workers have raised to DRAS that they are not being paid for overtime, can be expected to work outside of their rostered hours, or expected to use their own money for travelling to appointments, or their own money for meals if taking participants out.
The particular experiences of Aboriginal and Torres Strait Islander participants, participants
from culturally and linguistically diverse backgrounds, and participants from low
socioeconomic backgrounds, with the NDIS
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It can be difficult to get connected to the NDIS and disability supports for adults who did not receive a diagnosis or support when they were a child because the less services an individual is linked in with means that they are less likely to be connected into a pathway to the NDIS or
disability supports – which is a particular barrier for people from low socioeconomic
backgrounds if they cannot individually fund assessments. As with the CBD, there is no
government or non-government funding for assessments that would address the NDIS
eligibility criteria, but this is even more limited in regional areas;
ADELAIDE OFFICE RIVERLAND SOUTH EAST
411 Henley Beach Rd Brooklyn Park SA 2a Ahern Street Berri SA 5343 PO Box 1210 Mount Gambier SA 5290
5032 PO Box 868 Berri SA 5343 Phone: 08 8351 9500
PO Box 411 Brooklyn Park SA 5032 Phone: 08 8351 9500 Email: administration@dras.com.au
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The culturally and linguistically diverse (CALD) NDIS strategy outlined that currently there exists a lack of interpreters and translated material, along with a lack of culturally appropriate services (including a lack of diversity and racism) – this is an issue in city areas already but is even more amplified in regional areas;
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There can be a need for an interpreter to speak with medical practitioners but it is difficult to get access to interpreting services or make medical practitioners aware that having an interpreter is needed;
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There is limited access to bilingual doctors particularly in regional areas;
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As the NDIS is a government program, for Aboriginal and Torres Strait Islander people, there is intergenerational trauma and a barrier of contacting government services, as well as a fear of asking the government for help;
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It is important for the NDIA and NDIS service providers in regional areas to organise events such as a ‘meet and greet’ between disability and Aboriginal services, so the disability support sector can meet Aboriginal people where they are, which breaks down barriers and builds rapport, and that events are held in culturally safe spaces.
Any other related matters
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DRAS queries whether the NDIS inquiry can visit regional, rural and remote areas to speak to NDIS participants, carers and families, advocacy organisations and NDIS service providers on the ground.
ADELAIDE OFFICE RIVERLAND SOUTH EAST
411 Henley Beach Rd Brooklyn Park SA 2a Ahern Street Berri SA 5343 PO Box 1210 Mount Gambier SA 5290
5032 PO Box 868 Berri SA 5343 Phone: 08 8351 9500
PO Box 411 Brooklyn Park SA 5032 Phone: 08 8351 9500 Email: administration@dras.com.au