Dear Senators of the Select Committee on Autism,My name is and I am the father of our little boy – who is three anda half years old with autism. was diagnosed to have level 3 autism last year (2019) in May. He wassuspected to have autism by a private speech pathologist earlier that year.We privately paid for his autism assessment as the wait in the SA public sector waswell over a year (now, this is disappointing because early intervention is so critical, towait more than a year to get assessed and then literally fight NDIS for funding, thatprecious time is gone to waste).To give everyone a reference, has had early intensive behavioural intervention(EIBI) from the get-go and I am glad to say after a year, he has come leaps andbounds. If we were to wait a year for the public system, his prognosis could be so fardifferent from what we are looking at now.To give a bit of insight in the NDIS bureaucratic mess that we encountered, I firstcontacted NDIS ECEI partner to explore what assistance may be available forwhilst we await a formal diagnosis. What I was told was disgusting, that ECEI is notinterested until a formal diagnostic report was provided – even though we wereverbally informed had level 3 autism.Then when I did get the report, ECEI told me they would take 3 weeks to look at thereport before anything would happen – what shocking use of federal money foruseless faceless bureaucrats to sit behind the phone whilst kids around the countryare desperately awaiting assistance.In such situation, I made contact with Hon. Minister for NDIS Stuart Robert via email.He was very good to us, he actually called me the next morning and we had a goodconstructive conversation. That afternoon things got running, I had ECEI contact meto tee things up.In the end, it was about 3 months before received his NDIS plan – those 3months we self funded everything ourselves – thankfully we had some savings thatwe could do so and thankfully Minister Robert and his office intervened.However, it should not take a passive aggressive email to the Minister to get thingsrolling, the system should be much more streamlined than what I encountered.Talking about NDIS plan, that’s another shambles. was having 20 hoursof EIBI per week upfront which we were self-funding, and that’s what we asked for tobe funded.Our lovely ECEI people decided to fund for 4 hours of therapy per week at NDIS rate,essentially we asked for apples and they gave us pears.When I questioned this, I was told that NDIS don’t fund for therapy at childcarebecause that’s duplicating the funding – so NDIS expects childhood educators to playbabysitters, educators and therapists.
We went to NDIS Internal Review based on that line — the internal review officer was NEXT TO USELESS. She got hold of me on a Wednesday, saying she got allocated our request for review, mentioning she will get in touch if she required additional information — and magically on the Friday, told me she came to a decision.
She called and told me the review was rejected, the sole reason been that asking for speech pathology involvement for feeding therapy was duplicating the EIBI.
She didn’t consider EIBI cost was closer to $60000/year before the feeding therapy, when was funded for $40000.
Our experience with NDIS, suffice to say, was less than impressive. We appealed to the AAT and common sense prevailed, and NDIS came to the party and funded for what we asked for.
But dragging the lawyers in, I bet the extra $20000 or thereabouts we were after for
| | would have been equivalent to the lawyer fees.
The other thing I’d like to raise re: NDIS and how they perceive ‘value for money’ — we were asking for funding for EIBI which has established evidence, which itself should meet the ‘value for money’ and ‘evidence based’.
How can some lousy bureaucrat decide therapy is not ‘value for money’ — when the health department funds the PBS for some types of immunotherapy for acute lymphoblastic leukemia to the tune of $83000 per cycle and the overall survival is 7.7 months.
a and all autistic kids, have a lifetime ahead of them, the government and NDIS should be doing much more, be more proactive, in getting the kids onto early intervention sooner rather than later, to give them the best chance in life anda reduced reliance on welfare and social support in adult life.
What most parents ask for is fairly reasonable, for us, we weren’t asking for millions, we asked NDIS for what we were actually prepare to self-fund ourselves, we put our money where our mouths were and initially self-fund.
To have an idiotic bureaucrat at NDIS tell me that what we are doing for iis not ‘value for money’ beggars believe.
And for the PBS to spend tens or hundreds of thousands of dollars to give cancer patients a few extra months in life without blinking, whilst NDIS drag their feet and bicker over ‘value for money’ and state governments taking their sweet arse time to get kids assessed for autism, beggars belief.
We want state governments to be better funded to provide autism diagnostic assessments in a timely manner (within 6-8 weeks of referral), we certainly hope the federal department can fund the states and territories better in this regard, and audit the states / territories to ensure this time frame is met for funding to continue. Right now waiting for over a year for an assessment is simply unacceptable.
And lastly, the Inclusive Support Program (ISP) for childcare (run by the Education Department) is too much paperwork for busy educators for what it is worth.
BE could be getting some extra help at childcare from the ISP, but his centre director doesn’t want to blink at it because the paperwork aspect is such a burden. In addition, the ISP pays for an extra educator to the tune of $23/hr for up to
25hrs/week. This is peanuts, considering the superannuation and workcover levythat are also imposed. Has the education department done their maths?To only pay $23/hr for someone to look after their toddler, to teach and guide them,to prepare them for life ahead, is disgraceful. I pay my babysitter more than thatbecause I value her looking after when we need help.To sum up everything – 1) Streamline NDIS, particularly ECEI and in autism, have bureaucrats who understand the condition and the importance of early intervention. 2) NDIS needs to reassess what they deem ‘value for money’ for early intervention in autism. Best practice suggests 15-25 hour of EIBI a week, we are talking up to $80000 a year – compared to $80000 for keep a leukemia patient going for 7.7 months. 3) State and territory health systems must get better in getting kids in for diagnostic assessments, a year is far too long. Federal funding should be linked to this, states and territories should be held accountable for their woeful performance in autism assessment. 4) The education department really need to look at their ISP program and update their funding to be more contemporary to today’s standards.Thank you all,Kindest regards