CAPABILITY AND CULTURE OF NDIA

Submission to the Joint Standing Committee on the NDIS

About Kin Disability Advocacy (formerly EDAC):

Kin Disability Advocacy formerly (EDAC) is Western Australia’s peak not‐for‐profit organisation advocating for the rights of people with a disability, from a Culturally and Linguistically Diverse (CALD) background and their family and carers.

Kin Disability Advocacy is a member of the National Ethnic Disability Alliance (NEDA).

Kin Disability Advocacy currently receives recurrent funding from the Australian Department of Social Services (DSS) and the WA Department of Communities Disability Services (DS).

Kin Disability Advocacy delivers individual and systemic advocacy services in the metropolitan, regional and remote areas of WA. This includes state-wide CALD advocacy services and individual generalist advocacy to WA’s North-West region (Kimberley and Pilbara).

Additional project funding is used to deliver human rights-based self-advocacy training for people with disability and their families/carers.

Kin Disability Advocacy runs DSS funded Digital Communication Project where issues of disability and ethnicity are discussed in terms of new and existing services, policies, legislation, etc.

Kin Disability Advocacy also generates extra income from its cultural competency training for the disability services sector. This training is delivered in line with the National Disability Services Standards.

Kin Disability Advocacy appreciates the opportunity to provide comments in response to the Senate inquiry on the capability and culture of NDIA.

We commend the Senate Joint Standing Committee on the National Disability Insurance Scheme undertaking this inquiry and giving us the opportunity to respond to the terms of reference for the inquiry into the Capability and Culture of the National Disability Insurance Agency (NDIA).

We would like to see changes to how the NDIS operates in several key areas relating to registration, planning, implementation, and reviews (internal and external Appeals).

Submission: Participant Experiences with the NDIS Process

In this submission, we outline and address what NDIS Participants told our Advocates about their experiences with NDIS process from first initial contacts/registrations, planning, implementation of their plans, the process of internal reviews and the external appeal process. Our submission arises from issues raised by Kin’s Individual Advocates and clients we represent.

The information discussed is directly from issues arising out of the advocacy we provide clients and our contact with NDIA.

Cost-saving over the well-being of participants

NDIA’s culture is focused on cost-saving over the well-being of participants disregarding person-centered approach.

This direction makes NDIA largely failing to give effect to Australia’s obligations to the Convention on the Rights of Persons with Disabilities (CRPD), enshrined in the NDIS Act 2013.

Kin Advocacy noted with concern that since the role over of NDIS, our advocate staff struggle with the high record volume of access requests denied, inadequately funded plans and plans being unfairly slashed.

Additionally, our advocates continue to provide advocacy support to participants for reasonable and necessary supports and services through the internal and external reviews processes.

Our clients continue to present their concerns around the “cost saving culture” and clients being expected to “prove” the supports they are asking for a “reasonable and necessary”.

Example Case Study:

Client: Client is a quadruple amputee living alone with her sister.

Issues: The client was funded by the NDIS for manual wheelchair but needed to upgrade to a powered version. One of the Perth hospitals had provided the use of a power wheelchair on loan (for over 12 months) but had wanted it returned.

Advocacy action: Kin was approached to assist and support the client in an appeal process at the Administrative Appeals Tribunal (AAT).

Originally the NDIA had said the request for a power wheelchair was a duplication of supports given they had funded a manual chair. They wanted our client to evidence the need for the wheelchair which meant the client having to pay through her plan funds, reports from her allied health providers. She was asked to identify the benefits of the power wheelchair compared with a

Outcomes

Funding for the wheelchair was granted after nearly 7 months fighting the case in the AAT. Prior to that our client had to go through an internal review process that took around 3 months.

This was for a case where the need for a powered wheelchair was obvious. The difference between a powered chair and a manual chair was obvious. However, our client had no choice but to go through these processes to get the right outcome which again was obvious.

The Tribunal

The Administrative Appeals Tribunal (AAT) is not the place to resolve issues concerning NDIS supports. It is a legal forum and while it is meant to be informal, the NDIA is always represented by a lawyer and this disadvantages the participants.

Ideally, matters should be resolved within the NDIA itself and perhaps things would have been resolved differently if there was an effective internal review process.

Some of our clients (both newly arrived refugees, Aboriginal clients living remotely, and client with Psychosocial disability) often have difficulty evidencing disability when applying to access NDIS. This means that often they go without support for lengthy periods of time whilst awaiting an appointment with specialists to provide the evidence required.

Thus, we note with concern that the behavior and culture of NDIA present adversarial norms where necessary disability supports are withheld from participants and little or no capacity is left for them to negotiate especially if our clients are struggling with language, culture or access to information.

The consequences of this practice and procedure are profound since they are already marginalized in the mainstream disability system and the option available for the participants is to withdraw their access requests or reviews, because the culture and capacity of the NDIA appears driven to minimise spending on participant plans.

Subsequently the participants are left without adequate support, impacting the health and wellbeing of the individual, and broken trust with the NDIA.

This culture potentially creates stress among our constituent participants (CaLD/First Nation), places demand on advocacy services, and increase unnecessarily matters at the AAT.

Page 4

We acknowledge that NDIA has the power and capacity to significant influence how CaLD people with Disability are treated, by the Agency and by all NDIS providers, but this unfortunately is not demonstrated commitment through its structure, policies and culture to improve its practice and cultural change across the Agency and its workforce, including community partners.

The nature of staff employment, operational processes, procedures, and engagement:

NDIA Engagement - there is inaccessible communication and engagement. Inadequate staffing numbers and high turnover of staff impact on clients trying to engage with Local Coordinators or planners.
NDIA rely on Call Centers without consideration of other alternatives that could provide appropriate support for our cohort group – CaLD people with disability. For example, participants contact preferences or needs are not respected or valued via the Call Centers, timely interpreters are not provided and not so assuring that staff have adequate cultural competency to help CaLD people with disability. Therefore, lack of consistency of information being provided by staff leads to confusion for clients. It is often difficult for clients from CaLD background to contact NDIA or being transferred to staff who can assist with problem solving or decision making. Clients often give up attempting to do so without the support of advocacy. There needs to be easy to obtain contact details for NDIA staff (liaison teams) not just contact through a call centre.
No clear policies on Language services and when and how to engage NAATI accredited interpreters. There needs to be increased education of NDIA staff and Partner in Community staff about engaging with Interpreters and the concerns around informal supports being requested to provide interpreting. Neither is it clear if staff have been provided with Cultural Competency training or guidelines on working with Ethno Linguistically Diverse groups or working in a culturally responsive manner. Most of our clients in the West Kimberley and East Pilbara are Aboriginal clients. As such, will only engage with NDIA if they have the support of an advocate. Kimberley staff report that some NDIA staff do not know how to engage with Aboriginal clients. Whilst there are Remote Community Connectors to assist with NDIS access, there are often periods of times when staff are not available in the community. There have been also occasions where meetings (planning meetings) have gone ahead without an interpreter in the case where the interpreter cancelled at the last minute, on these occasions the meetings should have been rescheduled or phone interpreter service should have been engaged to give opportunity to participants fully engaged.
Lack of consistency with what is funded and what is denied in their plans – hard to understand the decisions. CaLD people with disability and their families/carers share with our advocates how it is difficult to find information about the NDIS and disability service providers that is CaLD specific, accessible, and easy to understand.

Understanding processes associated with accessing the scheme

understanding the processes associated with accessing the scheme, the planning process as well as difficulties in engaging with NDIS representatives at various stages of being involved with the scheme is odious.

The processes and procedures of the NDIS are unduly complex, requiring participants to have significant capacity to understand. Those we advocate at Kin – CaLD people with disability are without capacity and are at risk of not being able to navigate the NDIS, particularly if they do not have informal supports that can provide assistance or do not comprehend the landscape of services through use of interpreters or translated materials. This means that the most resourced participants often have more favourable outcomes with NDIA as they better understand how to navigate and work with the system, yet our cohort clients feel marginalized.

Support coordination and support coordinators

Participants experience inequality in distribution of support Coordination funding. Subsequently, this potentially delays the implementation of participant’s plans.
Support coordinators working within the constraints of billable hours lack time to develop appropriate knowledge, which can lead to misinformation given to participants.

Meaningful consultation and co-design

In practice we do not see evidence that NDIA personnel engage CaLD community in priority decision-making activities. The NDIA fails to consider implementing true co-design principles, despite it being a legislative requirement. We see the Agency superficial operation of a consultation model implementing new initiatives/programs and then seeks feedback from persons with disabilities and the wider sector as they are implementing programs and then making last call “stop-over” to CaLD people with disability. This appears tokenistic because decisions are often already made without input from CaLD people with disability at the initial stages of planning. A true co-design principles must involve people with disability at all stages of development including design, decision-making, implementation, and evaluation.

Page 6: Source-Release Document

5. The complaints process

It is difficult to lodge complaints by CaLD community, the process lacks transparency, and it does not allow easy follow-up of complaints after they have been forwarded to relevant personnel.
Participants don’t receive a response for months or sometimes at all.
There is also fear on the part of CaLD participants to lodge complaints due to cuts on their plans or other means of victimization. This leads to a lack of accountability for the NDIA, in turn, eroding trust among participants.

6. Recommendations

Make easy access to information – reduce complexity and demonstrate serious and strong commitment to genuinely provide easy Read material, invest time with participants and collaboration with interpreters through the provision of accessible information about NDIS.
Understand that increasingly use of digital engagement with the NDIA subsequently creates barriers for CaLD people with disability. CaLD people with disability have limited skills to get online or get the support they need to navigate the complexity of online tasks and systems. Kin Advocacy Staff noted that without these skills or appropriate support, CaLD people with disability struggle to interact with government services (e.g. MyGov, the NDIA portal or the Disability Gateway) as well as some mainstream service providers. Therefore, we recommend that all websites and key information resources need to be accessible, available in Easy Read or written in Plain English and provided in alternative formats for CaLD people with disability. Additionally, the task of LACs and other delegated NDIA Staff can be more effective when supported by using interpreters and translators in engaging CaLD people with disability at all stages, sharing information and policy directions.
The NDIA to co-design improvements to the accessibility of its services NDIA structures, policies, and organs – to be inclusive of all disabilities, diversities, languages and cultural backgrounds etc.
Give priority to listen and respect the needs of the participants by treating their complaints with dignity to improve the service and resolve with urgency.
Better support for CaLD people and first Communities in rural and remote areas by taking services close to their locality.

This document has been authored by:

Dr Siyat Abdi Christine Grace
Systemic Advocate Manager of Advocacy Services
KIN Disability Advocacy KIN Disability Advocacy

www.kinadvocacy.org.au 08 9388 7455 | admin@kinadvocacy.org.au | 132 Main Street, Osborne Park WA 6017