In late June Elena facilitated a consultation here at the Collective Purpose office to hear about people’s experiences with the NDIS and mental health. We wanted to hear a wide range of feedback as it is important to know how the NDIS is working with other systems and the mental health sector.
The language of the NDIS was something that consistently came up. People told us that it is difficult to apply using the National Disability Insurance Agency (NDIA) language of “permanent” and fit within the principles of recovery. As well as this, if you use broad general language when applying you were less likely to receive a package and this is why advocates are so important. People also spoke about experiences with NDIA planners where there was confusion over what “reasonable and necessary” means and this was not consistent across meetings.
The application process to become an NDIS participant is something that has been consistently raised at events, in people’s feedback, and again here. People said that the process to apply is long and stressful, that NDIS assessors are often not trained in mental health, and that even people who are experienced in advocacy are finding the process difficult – so what does this mean for people who do not have experience in advocacy?
“They are saying you’re not on the list, but there is no mental health or psychosocial disability listed”
Another issue raised was the lack of awareness and information in the community about the NDIS. And not just the lack of information, but that there is misinformation, for example that people lose their Centrelink benefits if they become a participant, which is not true. It was also talked about that general and specialist services (for example GPs and paediatricians) do not have much information on the NDIS and this makes getting supporting documentation more difficult.
Other concerns that were raised were about people who are not eligible for an individually funded package and what services will be available now that services such as Partners in Recovery and Personal Helpers and Mentors are focusing on the NDIS. A few people told us of extremely concerning experiences they have had with unethical service provision, including a lack of transparency and services being taken away when a complaint was made.
In the second part of the consultation we focused on what the NDIS could bring to people’s lives, and ideas to create positive changes. People spoke about how the NDIS should support people with psychosocial disability to achieve their goals, be about true choice and control, and that the actual process of applying for support under the NDIS should be a positive experience.
“If we come back to those recovery principles, how could those be implemented when we are applying for, and accessing the NDIS”
A number of specific recommendations were brought up, including that there should be a clear and easy complaints process, a code of conduct for providers, an independent body that monitors this code of conduct, and more easy to read documents that are up to date. Public advocacy was also mentioned as something that could help in ensuring the views of people with lived experience of mental illness or psychosocial disability are heard and acted upon. This could include a well-known consumer advocate advocating at a national level or a national consumer body that works with the NDIA and federal government on these issues.
Thank you to everyone who came in and spoke with us. It can be overwhelming to read about these significant problems with the NDIS, however we feel that the principles of the NDIS are solid and we will continue to advocate for a better process and for lived experience to inform these changes.