Canberra was one of the first places in Australia to roll out the National Disability Insurance Scheme trial, a trial that was designed by a Labor government and was warmly welcomed by so many in my community.
However, the mood at the moment is not as warm. Fast-forward to 2017 and early 2018, and the stories I'm hearing are of people so frustrated with the current NDIS that they are near breaking point. They are so frustrated they are considering pulling out of the NDIS altogether.
Callum is 11 years old and suffers Kleefstra syndrome, a rare genetic disorder characterised by intellectual disability and other features. Callum received funding to attend a specialised school holiday program. This funding was removed at Callum's most recent plan review, and the explanation is absolutely shocking. In the ACT there is no after-school care for kids with disabilities—and that's a separate issue I will be addressing with our local representatives at the Assembly—so Callum has been attending an after-school program paid for by his parents in the mainstream system for no more than one hour per day for three days per week to fill the gap between Callum finishing school and his mum being able to pick him up after work. There is no other choice. Because Callum is forced into a non-specialised after-school care program, the NDIA has arbitrarily decided he doesn't quality for funding for a specialised school holiday program. No-one met with Callum nor his family in coming to this decision and no-one met with the organisers of the holiday program in coming to this decision.
While this issue has been referred to the tribunal, it must be at the back of Callum's parents' minds that, if the decision doesn't go their way, they will need to make a choice. They'll need to make a choice to cut back the hours at work during school holidays, which means less pay at the end of the day, or they'll have to face out-of-pocket expenses, which makes the additional work hours redundant anyway. How does this make sense and how did it get to this?
Nisrine is 12 years old, with severe epilepsy that has caused significant intellectual disability. Nisrine is also non-verbal, she is fed via peg tube into her stomach, she is reliant on a wheelchair and she requires 24-hour care. Nisrine's mother submitted three applications for equipment between March and May 2016. We are talking March and May nearly two years ago. The most important piece of equipment needed was a sit-to-stand frame. This frame was recommended not only by Nisrine's endocrinologist and paediatrician but also by her orthopaedic surgeon, her physiotherapist and her occupational therapist—that’s the recommendation of five medical experts. But, despite the recommendations of all of Nisrine's medical experts, all five of her experts, the process took months and months, with the NDIA needing more and more information. It was absolutely ridiculous.
When the situation became so impossible, when Nisrine's mum got so desperate to ensure the care of her daughter, she borrowed $9,000 from family to pay for the equipment that five medical experts—I will say that again: five medical experts—told Nisrine that she needed. What did the NDIA do? They said there would be no reimbursement for that $9,000 that Nisrine's mother had to borrow from family members to ensure the care of her daughter.
It is now February 2018. Those initial applications were submitted in March to May 2016—as I said earlier, nearly two years ago. While the NDIA's decision not to reimburse the sit-to-stand frame is heading to the tribunal, and rightly so, Nisrine is still waiting for approval of an activity chair applied for in the same period of time. This is simply unacceptable.
The worst of it is that I know Nisrine's experience is not isolated. I've had so many Canberrans, particularly over the Christmas break, coming to me and talking about the frustration of dealing with the NDIA and their experience of the NDIS. There are far too many different and negative NDIS experiences in my community to be able to tell you about with the time I have. Each story on its own is gut-wrenching. Knowing that they represent a trend is heartbreaking, and it beggars belief. The experiences I share show us that this version of the NDIS rolled out by this government is close to breaking point. (Time expired)