Current Issues Raised By Advocates Supporting People in the NDIS
In the discussion, there were a lot of issues raised that advocates have faced in navigating the NDIS for their clients and some of the examples of issues faced are raised below.
Culturally and Linguistically Diverse Clients:
There have been a number of challenges for culturally and linguistically diverse (CALD) NDIS participants that advocates have had to navigate. For non-English speaking clients, there have been incidences of NDIS planners meeting with clients without an interpreter. The onus is on the clients advocate had to arrange interpreters because, due to time pressures, the planners will still go ahead with the meeting regardless. It was raised that some CALD clients can be very reluctant to be seen to ‘rock the boat’, particularly with Government departments, and tend to be conditioned to agree to everything. Advocates noted that the time spent on these kinds of logistics challenges means that their workload is likely to drastically increase as the rollout continues.
Mental Health Clients
In the Mental Health space, there appears to be stock standard plans based on diagnosis. I.e. there is a generic support plan for bipolar, and a generic support plan for depression. There appears to be a lack of understanding around the social impact of mental health and its classification as a permanent disability- for example, there was a report of a client receiving a letter saying that depression is completely curable under the medical system.
To get any support for mental health, the onus is to prove “diminished functionality”, however there is no official measuring tool on functionality. Another issue is that the NDIS is shaped around giving people with disability the tools to make and achieve positive life goals and highlighting how such tools will assist in achieving these goals- the aim is not to highlight what the person “cant” do. There is a very big contradiction between the intention of the NDIS and the practice in this case. While there is an understanding that Mental Health fluctuates, advocates have found that they need to present the worst case scenario to get any support.
There are a number of process issues that need clarification. Advocates are not sure what level of support people will need, in order to factor this into plans. If their client doesn’t have family or other independent people, how is it determined what level of support they will need to get maximum benefit out of their plans. This is particularly true for those with an intellectual disability.
There is some confusion on the expectation of the NDIS to see people transition out of the scheme and become functional and independent without it, however the scheme is designed for people with permanent lifelong disability.
Advocates Assisting Clients with navigating the NDIS
Advocates noted that evidence we have from the Barwon trial demonstrates that where people had advocates to help them through the planning process they got much better outcomes from the plan than people that didn’t.
Advocates raised that they try to get involved in the initial planning but usually are not contacted until a client runs into an issue. By the time they get to the advocate, the clients are usually very upset.
In terms of setting up a NDIS plan at their first planning meeting, some advocates are advising against people bringing in a helpful kind family member who will feel obligated to offer to do everything. If this ends up in their plan, the support they come out with will be inadequate and continues the cycle of giving the responsibility to the family and friends playing the care role, rather than promoting positive relationships.
There are concerns from advocates about people who don’t have family, and live in a disability residential service. These participants are unlikely to have much support and the only support they are getting is from the advocate and the disability services system. There is concern about how to get clear information about their rights in this scheme these groups of people.
Issues in Rural Regions
In the rural regions, the problems are intensified. A local rural NDIS office is staffed by two people, both with no experience with disability. The office has no signage and the community don’t know where it is located. An advocate had the experience of supporting a client in developing their plan, and after the meeting with the Local Area Coordinator (LAC), the plan was documented and submitted. The plan was not approved by the NDIA and the LAC could not explain why, citing that they don’t make the decisions and that the only way to get the decision reviewed is to go through the review process. This process is very involved and complicated, and when the client is living in a rural area with no access to public transport, it is an exhausting and expensive process to have to go through.
On another hand, there are NDIS planners calling clients from other parts of the country and having a conversation, which they have no idea that it is the conversation that is forming the assessment for their plan, so clients are caught completely off guard. Making matters worse, the rural areas often have the highest percentage of people with disability with a high level of support needs, due to the closure of institutions and group homes in the area, and the clients have stayed on in their community.
The Appeals and Review System
At the consultation, there was a lot of discussion and story sharing around the Appeals and Review processes. Some key points were raised and summarised below.
It was noted that the first internal review has no timeline for completion and can mean that the time the process takes can blow out. One of the reasons for the holdup is because the NDIA have two people look at the review before making a decision. This can mean that the clients are left sending in information, and documents and trying to get information on how the process is going.
When a case goes to external review, the Administrative Appeals Tribunal (AAT) do the conciliation in Melbourne. Previously, through the trial, they would send their staff to Geelong to meet with the client, but they changed this policy citing lack of resources to send staff to Geelong. However the client has the right to say that they cannot travel to Melbourne (if they can’t). it is an unreasonable and impossible ask for some people i.e.: When a person can’t get out of a hospital bed or are set up at home with a lot of medical equipment, and they are required to appear in Melbourne or Geelong for a 9am meeting, there is no financial reimbursement for the huge cost of getting them there.
The external review now happens a lot over the phone because the NDIA and AAT is so stretched for time. Many results are working in the participants favour for now, and most things are done by conciliation. However the barrier for learning about this is that the decisions are all confidential.
It was noted that in the appeals tribunal, it can be overwhelming for clients because the use of words and language by lawyers overtakes the person, their life and experience. The role of the Appeals Officers is to remind everyone in positions of power that the process is about the person with a disability and their journey. The Appeals Officers get the person to read their story and also talk about their journey through the NDIA and disability because it can get lost in the process.
Using the review systems where needed is so critical- not just to get individuals the plans that they need for their lives, but it sets precedents and flows back into other plans. The appeals and reviews that have been processed by the Administrative Appeals Tribunal (AAT) have actually changed how the legislation and guidelines are interpreted and this flows back into individual plans. It also, for some people helps them deal with some of the frustrations and trauma of going through a review because they are motivated by the national importance of the decisions made and impact on other people.
Most clients who have been through the review process have been successful. It has taken up to six months sometimes. There have been a few cases where there is a clear determination that there is a health issue, but mostly it is worth going through the process.