Laura’s teenage son, Ben, has a rare genetic condition that requires him to have a high level of care. Much like many other families, the latest NDIS Plan she received did not adequately meet Ben’s support needs.
Laura’s 16-year-old son Ben was born with Angelman Syndrome, a rare genetic condition which causes developmental delay and regular seizures. Ben’s ability to communicate is limited and due to low muscle tone, he requires mobility aids to help him walk. Laura needs to support him in daily tasks such as bathing, eating, and getting dressed. She must constantly supervise Ben in case he has a seizure and requires oxygen or rescue medication.
Laura assists Ben in all these daily care activities, as well as other duties including self-managing Ben’s NDIS Plan. Laura balances her caring role while raising two other children and working part-time.
Ben became an NDIS Participant when he was 12-years-old, after the scheme was rolled out in Western Australia. The initial funding granted Ben support for his daily care activities, and access to physiotherapy to help him walk and speech therapy to help him communicate. However, as Ben has got older, his needs have increased, and his latest NDIS Plan did not accommodate this.
The improved daily support budget outlined in Ben’s Plan did not fund enough therapy to support his communication goals, despite Laura clearly communicating his goals during the Planning meeting with our Local Area Coordinator.
As this Plan was not adequate for Ben’s support needs, Laura submitted a request for the National Disability Insurance Agency (NDIA) to review their decision. To prepare for this, Laura spent hours gathering evidence and reports from Ben’s treatment and therapy teams to explain why the support he needed was reasonable and necessary.
However, despite Laura’s efforts, the NDIA upheld their original decision.
It’s incredibly frustrating, I feel like I’ve laid my life bare to help strangers understand my son and his needs, only to be casually rejected with no explanation.
Rather than accept this inadequate Plan for Ben, Laura applied for an independent and external review by the Administrative Appeals Tribunal (AAT).
Overwhelmed with this process, Laura came to Kiind. Our Peer Navigator was able to help connect her with advocacy organisations and Legal Aid.
Laura had to wait eight weeks for her case conference meeting with the AAT. She used that time to prepare carefully under the advice of her advocate, so that she knew exactly what she was asking for from the AAT. Laura also had to request even more assessments and reports from Ben’s therapy providers, at a cost of more than $2,000.
Laura found the AAT meeting to be intimidating, especially with the NDIS lawyers going up against her, however she held her ground and advocated for her son. Laura’s case was resolved during the case conference. She received enough funding for Ben to access weekly sessions of speech and occupational therapy.
If you need assistance to request an NDIS review, or to prepare for an AAT meeting, book a Kiind Pathway session with one of our Peer Navigators.
Do you have a similar experience to Laura’s that you would like to share? Add your voice to others and help us create a more accessible, equitable and inclusive society for our children. Submit your story here.