Jake and Howard
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
‘Inclusion is a poster, a sign, but rarely an action.’
Howard told the Royal Commission that his son Jake ‘has autism, is non‐verbal, and incontinent’ and has ‘no schooling option and no disability support, despite having an NDIS budget’. He is on waitlists for a range of therapies, but most of the providers in their region have a 6-12 month wait.
Howard said this is a ‘critical loss of support’ at an age when early intervention would give Jake the best chance of success.
Jake was scheduled to start at a mainstream school, but his early learning centre recommended he attend a one-year ‘readiness for school program’. He would start school a year later than planned.
A psychologist from the early learning centre prepared a ‘customised early intervention program involving speech therapy, occupational therapy, social skills group training, and psychological and behavioural support’. The program was approved and supported by the NDIA.
Jake started attending the program every weekday. After four weeks the service provider wanted to reduce his hours of care and support from full time to part time.
This had dire consequences. It meant one of Jake’s parents had to give up their job, and Jake was denied access to the agreed full-time customised program.
Howard requested access to the organisation’s formal grievance process, but was told ‘there is no such process within the organisation’.
Two hours later, Howard received an email expelling Jake from the program. Howard believes this was retaliation for asking about a grievance process. The service provider claimed it ‘had the right to terminate the agreement at any time under the terms of the service agreement’. Howard and his wife asked them to reconsider, to no avail.
Howard was unable to find a replacement program in the region that could offer an immediate start, and only two providers agreed to add Jake to a waiting list. He did find a provider outside the area but at twice the cost. Howard and his wife would need to pay an extra $30,000.
Jake is now at risk of not being able to start school next year, putting him two years behind his peers. Howard has had to stop working to care for Jake.
‘My son did not do anything wrong and is paying literally with his life outcomes, for an organisational failure and refusal to follow regulatory mandated grievance processes.’
Howard contacted a disability advocate who provided assistance to contact various regulators, but they explained the regulators have ‘limited power to intervene’.
Howard would like support from a disability regulator. He believes ‘individual organisations are too invested in their own interests, and their customers are vulnerable’.
He hopes ‘in future, a vulnerable disabled child can be supported and protected by … a regulator with teeth that can independently listen and direct outcomes’.
‘I hope that Australia becomes more inclusive in actions, not just words.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.