16/7/2020
Senate Select Committee on Autism
Department of the Senate
PO Box 6100
Parliament House
CANBERRA ACT 2600
Dear Committee Chair,
I am a parent of a child with autism and this is my response to the Senate Select Committee on Autism.
We first knew something was not right with our daughter when at the age of two and half, she had not really started to speak any words. We booked a paediatric appointment, in which the paediatrician (running more than three hours late due to being called to attend newborns at the attached hospital) made a rushed assessment of our daughter of speech delay. It wasn’t until an assessment from a speech therapist that we had engaged privately that we were directed back to a paediatrician again. It was an eight month wait to see her privately, and she advised the likely autism diagnosis. We were given the choice to wait (estimated waiting time of eight to twelve months in the public system), or get a private formal diagnosis within a fortnight, which we did despite the significant cost, as we didn’t feel we could wait any longer to get an intervention program underway.
After her diagnosis, we spent a significant amount of time and all of the federally funded money for that year on speech therapy with a well known provider, which delivered no measurable result and so we looked for other options.
We commenced Applied Behaviour Analysis (ABA) therapy when our daughter was about four, and still not talking. This was therapy delivered in the home by therapists in two hour blocks, tailored to our daughter’s needs by the psychologist who case managed her. After such a long time and significant frustration at not being able to get her to talk, the ABA therapy delivered a program that got her talking very quickly, and we saw big improvements in other areas including eye contact and engagement. For us this therapy was exactly suited to what we needed at the time, which was getting her talking.
The literature we read suggested that the best results for people with autism were gained with a large number of early intervention hours. We’ve averaged nine to ten hours of therapy a week right through until currently, and she is now nine. Most of these therapy hours have been privately funded as we used up the other available funding, with only a portion of psychology hours being funded on an ongoing basis. This has been a significant financial burden to us and to my parents who have split the costs with us, but we felt it was worthwhile to give our daughter the best start she could have.
In August last year we were accepted by the NDIS. Despite having well described and clearly articulated goals that we have been working towards for the last six years, I felt that assessment by someone with no medical background, no disability background, and who didn’t actually include all of our goals in the document submitted to the planner was a disappointing experience, and one that meant a review was inevitable. Despite extensive reporting describing the improvements we’d had with ABA, we were declined funding for the therapy hours (the nine hours a week that we were
funding privately) and were told that ABA was not considered ‘best practice’ in terms of therapy, despite information to the contrary on government websites. I felt this was due to the ABA program being delivered as a mix of disciplines rather than a neatly tickable box of speech therapy, or psychology, and a lack of knowledge about ABA from NDIS employees. As autism is a spectrum and everyone is unique, each will respond to therapy differently. It does cause me to wonder how many people will miss out on achieving their best due to this inflexibility from the NDIA, and I think improvements could be made in the areas of training and awareness of NDIS staff, and a broader approach to therapies that could deliver results should be considered by the planners. Assessments and recommendations from medical and other professionals familiar with the person with autism should be used as key lines of evidence in developing strategies to support the needs of the person with autism.
We requested a review of my daughter’s plan in November 2019 on the basis that it was inadequate, and did not support her goals, and received a new plan in March this year. The new plan has significantly more funding, however still falls short of where we believe it should sit for her to reach her full potential. We will be asking for additional funding at the end of this plan, particularly as she is in a critical period for developing her own self efficacy and self esteem, key to her future success.
The delay in getting to see a paediatrician, finding the right therapy type, and the NDIS frustrations listed above are common themes amongst my friends and acquaintances, both those with children on the spectrum, and those with additional needs other than autism.
Please do not hesitate to contact me if I can provide further information.