General issues around the implementation and performance of the NDIS

Submission 43

I have been trying unsuccessfully so far to gain access to the NDIS for two conditions: rheumatoid arthritis which is in list B and; Ehlers Danlos syndrome which is not. I am struggling to have rheumatoid arthritis recognised as permanent even with it being in list B and after two attempts i am now requesting a review of my case.

I also have Ehlers Danlos syndrome which is a PERMANENT genetic collagen deficiency as we cannot repaired our DNA. The problem is that it is a a rarely diagnosed condition and therefore the disability advocates don’t know what it is and the NDIA staff who make the decisions do not understand the condition either.

The frustrating thing for us with these permanent disabilities is that the staff making the decisions have little or no medical training and are making decisions and overriding the recommendations of specialists (one of mine is a geneticist).

Ehlers Danlos syndrome needs to be placed in list B with other disabilities that vary from patient to patient to enable us to get the assistance we required for example: physiotherapy so we can continue to walk.

I work part time and would like to continue to do so. Research suggests that this helps with mental and physical health. It also assists the economy. I would just like a little assistance with my mobility, learning and communication to be able to continue to do this.

Kind regards, Ruth Marsh