Susan Hall

Person with disability

Susan Hall

In response to question 2.2 from the discussion paper I am sharing an example of the advocacy that has worked for me. I became aware of Disability First Stop when my son was in Princess Margaret Hospital in WA being investigated for seizures and the possibility of having a genetic condition. I kept the pamphlet and a few years later rang the number supplied asking for help for my personal situation that was impacting on my family. At that point in time I had no formal diagnosis, I had been bed ridden for much of the time, but the only help I had been able to access was through CLAN in Midland, friends and family. I had stopped driving because I no longer felt safe to do so. Disability First Stop advocated for me to go onto HACC so that I could be driven to my specialist appointments. Eventually I received a formal “probably has Chronic Fatigue Syndrome” which has enabled me to access cleaning for two hours once a week.
I am now in the process of applying for the NDIS but at this stage have not been accepted due to the type and amount of assistance I require. I have asked for an internal review of this decision. I would hope that advocacy through the NDAP would be a available should I require it for this situation. At present I appear to be inbetween health and the NDIS and not formally recognised by either. I have been told by NDIS that they recognise that I have a permanent disability that impacts my life but that i am not eligible for the NDIS. HACC have said that they can no longer review my needs while this is being sorted out but thankfully are still providing two hours of cleaning each week.
Health conditions such as mine that are not well defined often slip through the cracks. I would hope that any changes to the NDAP will take this into account and help bridge the gaps for the people who are not eligible for help but desperately in need of help.