To the Committee,
We have been trying to access to the NDIS for our son (developmental delays with suspected autism) for almost 2yrs now, we are still waiting and he is not currently receiving any therapy.
Concerns were first raised when my son was 3, after multiple assessment processes he was seen by an OT who diagnosed him with a significant delay in both fine and gross motor skills, along with sensory processing disorder. His preschool teacher was also concerned about his behavior and social skills. By this point he was 5yrs old. He was also having significant issues with toilet training and seeing a continence physio. We applied for NDIS using the OT report (which outlined all these issues) in late 2016.
In January 2016 we were notified that his application had been rejected based on a lack of
supporting documentation - we basically needed more than just an OT report. | then spent the
next few months getting assessments done (both publicly and privately). This took time, the private paediatrician had a wait list for new clients, we used drop-in sessions for a speech assessment then a wait for a full assessment. We finalized all the documents and submitted the new application in August 2017. My son had just turned 6 (July 2017), we’d just paid privately for a 6month block of psychology intervention and he was being treated by a GP for encompresis (related to the toileting issues).
In November (3months after applying) | was called to be told that since my son had turned 6 he
no longer was eligible for early intervention funding and would need a diagnosis of a permanent
disability to become a member of the NDIS. | was told he should be able to access mainstream
community services and referred to the child development service. | have spoken to them on
several occasions and they can not offer him anything. There are literally no services he can
access unless we are able to pay privately. | asked for a review of the decision, since it is hardly
his fault that he has turned 6 and still needs early intervention because he wasn’t accepted
within this arbitrary time frame. | asked for this review in November and heard nothing until
January when | received a letter to say that the review had been lodged (2 months after
requesting it!). This letter said we’d be notified of an outcome within 21 days, it has been over
30 so | called NDIS (on hold for 20 mintues) where they told me that the 21 days was no longer
achievable and his review had not started.
Meanwhile we have been in the long and expensive process of getting a diagnosis for my son. The motor skills, behavior skills, toileting issues etc still remain. Our Paediatrician referred us to the Child development service (CDS) for an Autism assessment in April 2017. In order to get onto the CDS wait list you must have a hearing test completed and a cognitive test. Privately a cognitive test costs around $450. That is $450 that needs to be spent to get onto a public wait list! Alternatively you can go through school…. however my son goes to a catholic school and
they don't do cognitive tests unless they suspect an intellectual disability. | negotiated with them
and after a couple of months managed to take him for a school funded cognitive test. He refused
to participate, and | suspect that this is typical of children with autism being put in a testing
situation with a person they have never met. | then had to negotiate with CDS to let him on that
wait list despite the fact that he had not actually undertaken a cognitive test. They relented, allowing him on the wait list with a letter from the psychologist reporting his lack of cooperation. CDS estimated that he would be seen for an austism assessment in April 2018. A whole year since the paediatrician referral.
Upon learning that my son had been rejected from the NDIS and required a permanent disability diagnosis we decided to speed up the process and managed to get him assessed privately at a costs of $2150. Fortunately a community organisation helped us fund this. He had his
assessment in January and we are in the midst of a 8 week waiting period to receive the report. |
believe that a diagnosis of autism is likely.
Meanwhile the lady | spoke to at NDIS (2 days ago) suggested we put a hold on the review, as in
the unlikely event that it happens before his autism report comes in he may again be rejected. We would have to re-apply which could again take months. So we are now on hold until the end
of March when | can submit the autism assessment report and they can process the review. Best
case scenario for my son is if the diagnosis comes back in, the review takes place and he is
accepted onto the NDIS. We will then go through the planning processes which | have heard are
also time consuming. Even if we are able to get on NDIS | expect it will be many months before
he actually gets any therapy.
| have a beautiful, intelligent, quirky little boy who has some huge challenges. We suspect autism
and have been trying to access help for him for years now. This is an appalling situation especially for a diagnosis in which early intervention is recommended. The cost to my son is huge, the impact on our family is also enormous. The emotional toll of my constant need to fight
(and fail) to get help for my son is significant. | feel helpless, demoralised, exhausted.
We are not even participants in the NDIS but | have so much to say...... this process is
enormously frustrating and | believe completely unethical. My child, and many more like him, are
missing out. | hope you can help us be heard.