A four-year-old non-verbal boy has not been able to access about $27,000 worth of his NDIS funding for two years — since coming into the care of child protection services — his grandmother says.
In March 2021, child safety services in Victoria had Noah's* mother, who was battling drug addiction, relinquish care, making Noah's grandmother his carer.
"It was neglect that they were concerned about," his grandmother Leslie* said.
"She reached a point, where she attempted to commit suicide. She'd left Noah with some friends of hers."
Noah was born with profound deafness and has no oral language.
Before entering the care of the Department of Families, Fairness and Housing (DFFH) in Victoria, he was able to access support tailored to his needs, funded by the National Disability Insurance Scheme (NDIS). With Auslan and speech pathology lessons in place, Leslie says Noah was starting to respond to sound.
That NDIS funding is still sitting against Noah's name, but since being removed from his mother two years ago, no-one has authorised his new carer to access it on his behalf.
Leslie said the department was responsible for a highly vulnerable child languishing in care.
"It is criminal. It is so abusive. If you are going to remove a child from care, particularly a child with a disability, you have an ethical responsibility to ensure that the child's access to support comes with them," she said.
"If not, you get new supports in place for that child so they can reach their potential.
"It is a real abuse of power."
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'He needs intervention'
Documents show that Leslie has for months pleaded with the department to address Noah's needs.
Leslie to department staff, June 2022:
"Can I please have support accessing NDIS funding? Noah needs provisions in place to support his language and I am not able to do this without help."
The worker said the department was "in the process" of organising her a support worker who "will definitely be able to assist with this".
In August, Leslie found out from the support worker that Noah's mother, who is often uncontactable, had to give her permission to access his NDIS funds. She asked that the department arrange this with the mother.
When that did not get solved, she wrote again.
Leslie to department staff, September 2022:
"If I am honest, I am really frustrated that NDIS access has taken so long (and still there is no success). I am frustrated because Noah is the one that is impacted. He needs intervention if he is going to have any chance of acquiring oral language."
The case worker left the department and Leslie was back where she started.
After countless emails to the same effect, a new case worker allocated to Noah wrote a letter in December 2022, authorising Leslie to access her grandson's NDIS.
"As carer for [Noah], [Leslie] is granted permission by the department to make decisions for [Noah] surrounding his medical needs in particular support services as required under the NDIS care plan. [Leslie] will be required to establish support services for [Noah] and then review and amend these services as required for the duration of the plan being 21/11/2022 to 21/11/2023."
Despite this, Leslie was still not able to access his NDIS, telling the department the delay was "really detrimental" to Noah's development.
Leslie to department staff, March 2023:
"I have been trying for the entire time that Noah has been in my care to get this funding support in place for him, but six case workers later, it is still being blocked. I can't help but wonder where his language development would be now if he had this support when it was first requested."
About a week later, Noah's uncle got involved, writing to department officials the "disregard for Noah's needs" was "extremely concerning".
Noah's uncle to department staff, March 2023:
"I would like to note that under the reunification order, DFFH owes a duty of care to Noah which extends to ensuring that he has access to the NDIS supports he requires to properly support his learning and development. DFFH has been negligent with regard to this duty of care, and have instead consistently and repeatedly failed to facilitate NDIS access," he writes.
The DFFH said it could not comment on Noah's case due to privacy laws, adding the department "does not, and legally cannot block an NDIS participant from accessing their plan".
"Child protection practitioners and service providers strive to provide high-quality individualised care to vulnerable children, including extensive case management support and referrals to health, education and disability support over a period spanning many years," a spokesman said.
"We have introduced specialist disability practitioners who provide support for carers of children with disability."
The National Disability Insurance Agency said: "We are concerned about this case and will work with the participant’s family to ensure they are supported to access supports.
"The National Disability Insurance Agency's (NDIA) priority remains ensuring participants and their families receive the disability-related supports they need."
NDIS plans for children in care 'untouched for years'
Until September, Nathan Miles worked as an NDIS support coordinator in Queensland. Previously, he had worked in child protection.
It was his role at Access Support Coordination to help people utilise their NDIS plan "to the fullest capacity".
He said he just couldn't get the plans of children in state care "off the ground".
"I may be given an email, sent to me from NDIS, stating this person has been given an NDIS plan — they've identified that they would like to have support coordination to assist them. Here is their contact details, give them a call," he said.
"If that contact is a child safety service centre, you're screwed."
Mr Miles said he struggled to engage child safety officers in "conversations around what's best" for a child, and often had difficulty in making them "see the value" in signing NDIS-related documentation.
"I've seen historically plans that have been untouched for two years because there's no commencement of services," he said.
Mr Miles said not using allocated NDIS support could impact a child's future funding.
"If you have an under-utilised plan — which is what they call it when you don't use your plan effectively — then why are they going to continue to fund at that level, if you're not going to utilise it?" he said.
The NDIA said funding for a participant's plan was "not based on utilisation in previous plans, but the reasonable and necessary supports a participant requires".
The Department of Children, Youth Justice and Multicultural Affairs in Queensland said it worked closely with the NDIS and the federal government to ensure all children in care benefited from disability supports.
"We have employed 17 clinicians and 12 transition officers to work as part of a specialist services team to support child safety officers to work with children and young people with high and complex needs including complex disability, mental health and trauma-related behaviours," a spokesperson said.
"These specialists within the department help ensure NDIS plans are used to their full extent."
'I'm here to get Noah'
Noah is about to start school next year. Leslie fears that missing out on vital support for years has had a profound impact on his development.
"His life trajectory is going to be severely impacted upon," she said.
"If he can't communicate, how is he going to engage in school and education? How is he going to get a job?"
Leslie said she was considering legal action against the department, and even taking out a bank loan and "going into debt" to fund her grandson's needs.
"I have a [degree] in early childhood education and care. I'm educated, and I'm fighting the system," she said.
"Somebody who doesn't have the resources and the knowledge that I have available to me, I shudder to think how they navigate this system because it has been the most difficult thing that I have ever encountered."
Leslie said the department had failed to show respect for Noah's needs. She said mid last year, she was alerted by Noah's childcare centre that child protection workers were picking him up unannounced to take him to access visits with his mother.
"All of a sudden, we just had people turning up, saying 'I'm here to get Noah'," she said.
"There was no introduction to Noah as to who the person was who was picking him up. There was nothing like that all.
"What are we teaching this child? We're teaching him that it's OK to go with all different types of strangers that he's never met before.
"That's unsafe. Especially for a child that can't talk."
When Leslie raised it with the department, she was told staff had been instructed to notify the childcare centre ahead of picking Noah up "but clearly this did not happen".
Leslie said later, when a government-funded organisation got involved in Noah's case, pick-ups became communicated to the childcare centre.
The department's practice sees that deaf children be shown photos of their child protection worker.
*Name has been changed for legal reasons.
