You have told us that getting access to the NDIS is not simple or straightforward. Once in, planning processes are complex, confusing and stressful, there are problems with the culture of the NDIA and that there is little trust or confidence in decisions.
What you told us is not working
From what you told us we understand:
- Applying for the scheme is confusing and difficult. It is not clear what evidence is needed or who should provide it. The criteria around meeting the significant impairment requirements are unclear. Access to the scheme has become focused on diagnosis rather than need.
- The planning process is focused on what people can’t do, instead of what they can. Participants and families feel pressure to present the worst versions of themselves or their children to make the case for support. This is stressful and traumatising.
- Participants often feel judged by those they do meet in the planning phase. They don’t feel believed when they try to describe their needs and circumstances.
- Given this lack of trust, planning meetings can become arguments about whether individual supports should be included in a plan, rather than a chance to actually plan effectively for the present and the future.
- The adversarial nature of planning has created an unhelpful cycle. When people feel they are not trusted, it makes it hard for them to trust support will be there for them if their circumstances or needs change.
- For some, this process and experience is so traumatic they are unwilling to deal with the NDIA. This is particularly true for those that have intersecting identities or multiple forms of disadvantage.
- Participants are not recognised or respected as experts in their own life. The focus on using professional reports as evidence is not fair, creates a huge administrative burden and is expensive for people applying. These reports often assess people with disability outside the places where they usually live, play, learn or work - and miss essential information. It is unclear how the reports are used.
- Most participants never meet the person who will make decisions about their plan and budget – which is their future. Participants often feel that the people who help with the planning phase do not understand their disability, or the complexity of their lives.
- The majority of participants have a cognitive disability and so the processes for applying and getting a plan need to better recognise the needs of this group.
- For First Nations Australians and those from culturally or linguistically diverse backgrounds, NDIS processes must be culturally safe and trauma informed.
- Some groups in the disability community aren’t aware of the NDIS or that they can apply for support.
To have to talk to someone, with no understanding, no empathy or any idea of what it's like to live like this, and these people are deciding what I can and can't have, what's reasonable and necessary when they have no experience or understanding is a complete recipe for disaster.
I have found the whole process stressful and defeating.
[There is] no continuity within the NDIS, you get a different person every time and they request something different every time.
What we want to know now
How can we empower you through the planning process?
Prompts to help you answer this question:
- What does the NDIA need to know about you to make better decisions on whether you are eligible for the scheme?
- What would make access and planning simpler and less stressful?
- How can the NDIA engage better with First Nations Australians, people from culturally or linguistically diverse backgrounds, people who identify as LGBTIQA+, gender diverse people, people with complex needs and people from disadvantaged backgrounds in the planning process?