Nexus CEO Mark Jessop recently attended a community consultation in Hobart, arranged by Autism Tasmania, to discuss the National Autism Strategy.
Consultants working on developing the National Strategy were in Tasmania to gather feedback from those who have or support people living with Autism.
Mark, (pictured above with Autism Tasmania CEO Donna Blanchard at the Nexus-Autism Tasmania partnership launch earlier this year), presented some considerations surrounding the diagnosis of disability in children. Particularly those with developmental differences that become apparent during childhood, instead of being obvious in infancy.
“Two examples are the effects that alcohol has on the developing foetus and the effects that exposure to trauma has during early development, which can both adversely affect the development of a child’s brain and their ability to function as an adult,” Mark said.
“Because of the developmental nature of these things, they only become apparent as the child is growing up.”
Mark is concerned that this cohort of children may be excluded from the NDIS as a cost-saving measure, under the current Review that was commissioned by federal NDIS Minister Bill Shorten.
Nexus provides life-changing support to many of these children through our Complex and Individualised Support division, but it can only be done with the support of the NDIS. Mark’s experience working under the previous state-funded model was that many of these children slipped through the cracks.
As Youth Justice and Child Protection Manager for the Tasmanian Government from 2007-2013, Mark said there were about 300 young people in that time who were regularly getting into trouble.
He said these children did not live in stable houses and were often regularly excluded from school, and this added element in their lives, when combined with disability, led to many having poor-quality and life-long outcomes.
“In my view many of these children had some level of functional disability – sometimes this had been measured and assessed but often not,” Mark said.
Another point that Mark raised was around how the NDIS has changed our society’s willingness to diagnose children. Over the past ten years there has been an increase in the diagnosis of disability, particularly Autism and ADHD, and access to specialist early-intervention services to assist people that are crucially funded by the NDIS.
Mark said the challenge now is around providing support without stigmatisation or labelling.
“We need to make sure that people who are neurodiverse have a NDIS system that provides them with the diagnosis, support and services they need, without having to label or categorise them,” he said.
“We should be mindful of labelling all children with a diagnosis as disabled.
“What we need is a NDIS system working with state services that is focused on achieving outcomes not just placing a disability diagnosis on children.”
The final point Mark made was around Nexus’ groundbreaking partnership with Autism Tasmania, to deliver the Autism Capability Building training program.
This partnership is a new approach to developing disability services training for staff, by providing tailored training and organisational change opportunities, so our staff can better support clients who have profound needs.
The two-year partnership is a one-of-a-kind in the Tasmanian disability services sector. It combines building an Autism community of practice within Nexus, as well as providing company-wide training through the Introduction To Autism unit, and intensive training across an additional six units for staff who work directly with clients on the Autism spectrum.
“When it comes to clients with profound needs, we have had to make our own staff training opportunities at our own cost, as this material is simply not covered in the typical disability services training,” Mark said.
Find out more about contributing to the National Autism Strategy here.