The SA government has had a big investigation being done on disability and disability services by something they set up called the Social inclusion board. This was to investigate and put to the government where changes are needed. Over 2000 individuals (thou it caused near collapse, I gave a public talk to the board at one of the meetings) along with 120 different organisations took part in the consultation process. Im very annoyed as I just looked and SA CFS org didnt choose to have any input at all in this. They should of known this was going on.. those on the panel even told me they'd send them info on this as I enquired and saw the SA CFS org wasnt on the original consultation list as the ones doing the disability investigation for the gov. didnt know about our org. Tthe investigation meetings were also publicized about the state but I wanted to make sure they knew about it and could provide imput on how we are affected and the problems with the services for us so also spoke to the panel about our org making sure they'd be informed). I also are quite sure I also emailed the CFS org about it. I got in the post Friday, the SA blueprint (119 pages long) which has come out of this consultation with orgs and people, (which is a gov implimentation plan is going to be formed for disability for 2012-2020). Anyway i rechecked the different disabilities groups involvement in this.. Autism org, the org for the blind, Downs Syndrome Society, the intelectual disability societies etc.... I see that the SA CFS society didnt use this very rare chance to help bring change for those of us on a government level with this illness at all. .... All I can say.. is Im so so sad about that.. They could of shared how we have trouble with centrelink getting disabilities cause of a severe illness which varies and so many other things eg the high discrimination of gov depts due to the illness we have and gov. depts being naive about it. (I note the MS society wasnt involved either). This is a huge opportunity which has been lost. We need change on goverment levels.. but our orgs which should be our voices, when they have the chance and gov is investigating what needs to change.. they dont bother being involved to change things and dont put a submission or anything in. .. anyway.. the blueprint which has been put together from the consultation of the other disability groups and individuals who did partake which is going to goverment for implimentation is at http://www.socialinclusion.sa.gov.au/page.php?id=27 ........................ I'd like to add to this that I rang in crisis the CFS assoc about a month ago for emotional support and desperate due to me situation.. and asked them what are they doing to help change things.. and the reply I got was that I need to be patient and things will change with time as more doctors nowdays know about CFS then did in the past. told I just need to be patient... Ive been dealing with gov discrimination and the discrimination now of doctors and others to do with this illness for 14 years. I choose and went to jail for a month as I couldnt feed myself well and was going hungry so wanted to go to jail as it was the only way I saw out of my problems.. I still cant always cook for myself... and the person at the org just tells me I need to "just be patient". He/she obviously isnt having trouble just feeding himself and has never feared for his life with this illness. (He was a nice person but obviously just didnt understand how serious this condition is in some of us. I truely believe that if I get bad again, I could die, if it wasnt for my children living with me in the past when I was worst.. I would of died. So Im in constant fear of I may get bad again knowing I cant look after myself). I really hope the org reads this.. they should be ashamed of themselves for doing nothing when they could of hugely done something to help support us all. NO ONE should be in the situation some of us are in Sth Australia .. and only change at very high levels can change this for us. This should of been a top priority thing even if the only thing which was done for the year at the org level.