In September, Elena and Kirsten attended WentWest in Western Sydney to hold a consultation about the National Disability Insurance Scheme (NDIS) and mental health. The NDIS has been available in the Western Sydney area since July 2016.

People spoke about their experiences accessing the NDIS. In particular, attendees echoed what other people have said, including poor experiences with planners where the planning was done over the phone. One woman spoke about her experience where a planner called her at an inconvenient time and when she told the planner this, they said they were going to take her off the list, which was stressful.  People were not offered the choice to talk at a more convenient time or given the opportunity to have a face to face meeting.

People spoke about planners having a lack of knowledge and training in psychosocial disability. It would also be helpful if planners looked at the ‘whole picture’ and understood that people can have multiple disabilities and that the assessment tools used are difficult. For example, questions which ask people to rank their symptoms or experience on a scale of ‘1 to 10’ are often inaccurate and hard to answer.

I would like for assessors to be qualified in all areas. If you are assessing someone for mental health, you really should be qualified in that area or if it is physical ailments you should be qualified in that area. I don’t want to see, people coming out and asking questions like “What is your pain level today” and you’re thinking do I rate this on a scale of what I think they think the rating scale is or do I rate it on my own personal scale.”

The issues during the transition to the NDIS was an area of concern. One person talked about how he was accessing a service and they kept sending out the same worker, when he preferred not to work with that person. When he requested to move to a different service provider he was told he could not change because he was in the process of transition to the NDIS. People also talked about the difference in available services, depending on which area you are in. The complaints process was another area people experienced poor customer service in and much improvement is needed in this area.

“But during the transitional phase, they said no you can’t change providers because you are transitioning to the NDIS and already I am not liking the NDIS because they are locking me into that.”

Attendees and support workers at the consultation expressed concern about the lack of consultation with the sector in general, and told us that there should be a focus on recovery, as with a focus on recovery people would need less support in the future. In line with understanding mental illness, people talked about the need for the National Disability Insurance Agency (NDIA) to understand that recovery is not a linear process, that there are ups and downs and recovery means a meaningful life for that person – either with or without symptoms.

People talked about the importance of people’s attitudes, both in policy making and service delivery and that the NDIS should stay true to its promised focus on investment, rather than the amount of money given.

Really it starts with people attitudes”

“Courtesy, understanding, a bit of humanity might go a long way”

A big thank you to everyone who attended the consultation. Thank you to WentWest for partnering with us in organising and facilitating the consultation. There are a few new pieces of work Being is undertaking on the NDIS and mental health, and we are about to start writing a report with information and recommendations learned from these consultations and the online survey.

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