Standing up for Canberra

NDIS Cuts Funding to Those Who Need It Most

My community was one of the first in Australia to experience the benefits, the value, of the National Disability Insurance Scheme, when the trial began here in 2013. Since then, the full scheme of the NDIS has rolled out. It began rolling out in 2016. Many Canberrans have been on the NDIS for the last five years, through the trial to where we are today.

According to the NDIS quarterly performance report released in March, there are 6,553 participants living in the ACT. That is 6,553 people who had hope, who had great optimism, about the opportunities, the choice, the potential that would be unleashed as a result of the NDIS. But I have heard nothing but desperation and frustration at the stress and harm caused by the plan review process and the significant funding cuts people are experiencing—not from all those 6,553 people, but from a significant number of people.

The performance report also showed an overall satisfaction rate of 84 per cent. However, 16 percent of all participants believe the NDIS is not providing them with the assistance they require. That 16 percent of participants includes people like Gabrielle. Gabrielle is a seven-year-old girl who loves dancing, swimming and gardening in her veggie patch with her mum. She loves to be creative, making crafts and playing with Lego.

Gabrielle also happens to have autism spectrum disorder and global development delay. Gabrielle's NDIS funding has been cut by 30 per cent, a significant cut for Gabrielle, who, at seven years old, needs as much early intervention as possible so that she can develop, so that she can improve, so that she can increase overall her quality of life - so that she can reach her full potential. Gabrielle needs frequent and ongoing therapies and treatments to improve her daily life, and this 30 percent cut will have a detrimental impact on her recommended therapy schedule. But, unfortunately, Gabrielle is not alone.

Since Christmas last year my office has had a constant stream of participants who are concerned at the processes for plan reviews and the communication and transparency of the NDIA. One of those participants is Lachlan. Lachlan is a seven-year-old boy who requires constant supervision and one-on-one care, after suffering a horrific seizure at 12 months old. The seizure was so bad that Lachlan underwent emergency surgery, with one-third of his brain being removed, resulting in severe and permanent disabilities.

At Lachlan's recent plan review, Lachlan's mother and support provider requested additional funding for core supports, which cover Lachlan's continence products and out-of-school-hours care. Lachlan's mum is a single mum working a full-time job, and she has no family support here in Canberra. She is doing it tough but she is one tough mum. To her outrage, Lachlan's overall plan was cut by almost 70 percent, with funding for his core supports, including his one-on-one care after school, cut by a whopping 75 percent.

What's most galling about this is that Lachlan's mother was told that after-school care is considered a 'normal parental responsibility'. Don't try telling a single mother holding down a full-time job and making a home for her child with severe disabilities what a normal parental responsibility is. This is what the NDIA consider 'reasonable and necessary'—forcing a mother to choose between care for her son or working to provide a home and the treatments he requires.

The NDIS was meant to be about choice and control. It was about providing autonomy, independence and tailored solutions, but the planners at the NDIA are leaving no choice for families and putting them in impossible situations, like Lachlan's mum. What are the qualifications of the planners at the NDIA? It is absolutely unacceptable that NDIS participants feel they are unheard and not treated with respect. What we need is an NDIA that will listen, engage and provide a case manager for individuals or families that will make a difference. We need to give people with disabilities what they want—freedom of choice and control over their lives and dignity.