My experience my son had speech delay as well as epilepsy and other pointers that our Gp often dismissed. He was referred to a WACHS speech therapist who did not want to see him as he was on the public waitlist to have his tonsils and adenoids out, this was in August 2019. We went privately to have them removed in June of 2020. It was only after this that he received an initial appointment with the public ENT.
We started seeing the speech in August of 2020. We were trying to prepare him for Kindy in 2021. She had concerns and referred us to a Pediatrician within the public system. On a follow up appointment with ENT his sleeping had not improved and I mentioned to ENT who gave me a list of Private Pediatricians, who I rang to find out who had the shortest wait list, Most were not taking on new clients or had 12month + waitlists. ONE central health had a new pediatrician starting in January of 2021 that we saw 6months after my concerns were first raised.
In January of 2021 he was referred for ASD testing by the pediatrician which had a large private cost that wasn’t covered by our insurance or medicare, cost was $2200+ it also came with a 6month waitlist for the testing and 8week+ wait for the report. It was nearly 2 years later from first speech visit that we ended up with a diagnosis. The pediatrician had not even read the report before it was given to me and then was informed that he had resigned and that ONE central health no longer had pediatrician’s, So now we are without a pediatrician and will have to start our waitlist time all over again with a new referral that usually needs to renewed all the time,
He was diagnosed with Level 3 ASD highest needs and support by the diagnosis team. We have applied for NDIS, but there are no providers other than OT that can service him, without a large cost. He received 6months of in kind services from WACHS, but now only has OT that is attending. The education department has deemed him to only be level 2 so he is only entitled to 2 days EA time. He is not receiving the early intervention that he deserves and requires.
In the 2 years we waited for a diagnosis he did not receive regular speech through WACHS. The speech therapist also did not do a lot of actual speech with him more behavioral. I feel that she either thought that she couldn’t help or id not know how to help him. Now I have been told that because he is on NDIS WACHS will no longer see him as he has seen the via video link while wearing masks not in person for 6months whilst having NDIS funding.
So here we are out of pocket not any really better off before diagnosis. With precious time lost and still being wasted. The whole system is so broken from start to finish with so many kids falling between the cracks, we probably still being waiting to see a pediatrician in the public system. My son is still not getting the support and interventions that he deserves or needs.
Written by one exhausted mother trying to do her best but feeling like she is failing and letting her son down because the system is broken.