-
My name is and my son is four years and three months old. He has level 3 autism. He was accepted as a participant of NDIS in May 2018. We received the first funding in July 2018. Due to the lack of quality intervention programme, we currently take him to the Child Development Institute in Wollongong to receive early intervention based on Early Start Denver Model (ESDM) on Tuesdays and Thursdays. That means we spent about seven hours on the road each Tuesday and each Thursday. Over the period, we have encountered some issues.
-
The first one is that early intervention is not ‘early’ under NDIS. It took more than eight months to become an NDIS participant and get the first funding. The initial funding was inadequate. We lodge an internal decision review. The application took three months to be finalized, and it was rejected. Then we took his case to AAT. It took another seven months to settle his case. NDIS let him miss the precious time for early intervention. This is unacceptable.
-
The second concern is that NDIS does not promote the approach that is likely to work for children with autism. Interventions based on applied behaviour analysis (ABA) are recommended by experts and supported by scientific evidence. The detail is in “Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers”. However, during the internal review process and legal process, we were told many times NDIS does not support ABA.
Because of the lack of guidance, parents are left to figure out what to do by themselves. Also, allied health professionals do not undertake the proper training because of the lack of guidance from NDIS.
- The third concern is that the uncertainty in funding. The initial funding we received was not adequate for his management. After a prolonged review process and legal process, we are eventually given
Adequate Funding
Adequate funding for one year. Because of the uncertainty in funding, many parents find it hard to fund comprehensive intervention programmes and sufficient intervention hours. Meanwhile, the uncertainty in funding also causes uncertainty among service providers. Because they do not know how long the child is going to stay with them. Given the fact that most providers are private entities, the uncertainty in funding may hinder their ability to provide services.
The fourth concern is that NDIS should help build large autism intervention centres in both capital cities and regional cities. Currently, the majority of providers are in Sydney and Melbourne. Autism is a complex neurobehavioural disorder. The intervention needs coordinated effort and comprehensive expertise. It requires a tremendous amount of human resources, including allied health professionals, early childhood teachers and parents. It also needs a large amount of teaching material. Professionals in smaller clinics may not be able to carry out effective intervention due to the lack of human resources and experience. Meanwhile, a lager autism centre can also provide training for parents who can help generalization at home. Unfortunately, many private providers do not offer parent training.
Overall, NDIS’s performance in autism early intervention is unsatisfactory.