Independent Assessments

                          Submission 370

To whom this may concern

My 11 year old son has a rare syndrome called Coffin Siris Syndrome, he’s 1/35 in Australia and 1 out of 333 worldwide known diagnosed. We live in rural Snowy Mountains with very limited therapists that he needs to improve all aspects of his life, they come and go like changing your socks, that’s another story, but we’ve been lucky enough for them to supply us with their reports for us to receive some funding through NDIS, to work on some of the syndromes symptoms. We constantly travel to Canberra and Sydney to see specialist therapists and Paediatricians who don’t know much, if anything about this syndrome, mainly what us parents tell them and what I learn from other parents around the world. So please, you tell me how some desk jockey in Canberra is going to independently assess my child in what he needs, Really!!!

David Kelly