By lukey2007 |

I'm trying to start a lobby group of health professionals and parent/carers working on the front line with children under 6 years who do not have a diagnosis (e.g. autism) and require services to get assessments free so that children can get early diagnoses and be eligible for funding to treat different disorders. I have found a huge gap in services for children who are not getting assessed and professionals in the industry not advising parents of assessments they can get done because they cannot afford the assessment. At the moment i would like to brainstorm with health professionals and parent/carers so that we can formulate some ideas about how to lobby government. I'm a Social Worker by profession and work in rehabilitation. I have become involved in this through my own son who may have Autism. I'd really like to hear from others.

Hi Lukey2007

I work in the early intervention field and come across families whose children are in the beginning of the assessment / diagnostic process. In Sydney metro there's a few ways to get assessments through the public health system, some with waiting period. The Disability Services Unit (Westmead Children's Hospital) is one and parents can self refer. A lot of families go through their local area health centres where most have multidisciplinary teams to do assessments, diagnosis and therapy. With the Federal Government's HCWA package specific to autism, they have provisions for 4 diagnostic visits prior to diagnosis if it appears that the child may show traits of autism. Some families prefer to go to private practices so they don't have to wait for too long.

Thanks for your reply,

i live is regional NSW (Armidale). From my experience with the process of getting my son assessed for Autism, it was not until i found a Psychologist (Autism trained) that i knew about getting an early diagnosis. I was linked in with a Paediatrician, Paediatric OT, early intervention and speechie, but noone mentioned i could get this assessment until i was talking to a colleague (Psych), who put me onto a psych. When i asked the OT and early intervention about them not advising this information, they basically said tha most people cannot afford the assessment, so did not tell me. I am not putting these people down as i know they are dedicated professionals. But, I also believe they may have not known. I feel the current system is a bit disjointed in terms of getting people assessed. I have since come across other people who have not received diagnoses until their child is 5 yrs and have had similar experiences. I really want to raise awareness about the gap in services in rural areas (anyway) as it is morally and ethically wrong. Only that i work in the health profession and know most professional people in town and am probably more assertive than others, is the reason i have made more ground with my son.

Hi lukey2007,

I have been involved in setting up a local charity group here in South Australia where our main project is aimed at helping the parents of children with possible Autism / Asperger Syndrome get the assessment they so desperately need / deserve. We currently are running project Jake which is about a child who is 6 years old and he has been segregated from many events because people don't understand this situation the parents are in.

With a little research we found this to be a very common problem and decided to dedicate our main project to this cause. To be honest Jake is my inspiration for this project as I feel as a group we could help some of the many children who are waiting for the assessment. our project is at I m not asking for any donation but I am personally looking for people with knowledge and would like to see how we as an organisation can best help in this situation. Our view is that here in Adelaide we have Autism SA which are very good but also very busy so rather than start a new group for the same cause we are hoping to raise funds to help the children get assessed much more earlier than normally possible. We are not about 1 child but it is easier for us to understand the case in front of us and I have spoken to many parents who have knowledge or who is in the exact situation.

I apologise if my writing is not clear but I agree whole heartedly with your suggestions and I can be contacted on if you are happy to talk about this situation more.

Thank you
Incy Wincy Children's Charities Inc.