International Day of People with Disability

December 02, 2019


We're here to mark International Day of People with Disability, a day which says to the approximately four million Australians with a disability that we respect you and as a society we believe that you should have choice and control in your life. That's what the National Disability Insurance Scheme, designed by Labor and eventually given bipartisan support, is designed to do at its best. Sadly, too many participants are not experiencing it at its best, and nor do our other supports, like the Disability Support Pension, allow people to be equal and positive contributors to our society, free from discrimination. My office receives frequent calls from people being taken off disability support pension or being refused access to that support. They ask themselves and us: when is a disability not a disability? By the time they think that the problem is big enough to talk to their local member, they are almost at breaking point. That happens when Centrelink writes to you and tells you you don't meet the 20-point requirement, perhaps because you have an invisible disability such as mental health issues or hepatic encephalopathy, which is one of the most difficult conditions to articulate clearly! Because it's unusual, not known about and rare, it isn't as well understood by those making assessments. It causes memory loss that can lead to brain damage. The cost of assessments and more appointments with doctors, specialists and occupational therapists when you're not able to work makes progressing these claims really challenging.

I have one woman in my electorate who is also desperate for a job but is battling a health issue that restricts the work she can do. She's made the very reasonable request to have her job-finding support provided by a specialist disability provider—a very sensible approach. They'll understand her needs and support her to find the right workplace and the right job. But, no, the government has not allowed her to swap job providers. This woman wants to work, but the inadequate system in place for people with disabilities prevents her from making it happen. For people with disabilities, these are the frustrations that on a daily basis unfairly restrict them making the contribution they would like to make.

Then there are the imperfections of the NDIS that make participants continue to have to prove their disability on an annual basis. As one of my constituents, Riley, pointed out, he will still wake up a quadriplegic tomorrow. He should not have to keep proving his disability time and again. He can self-advocate. He can get out there and have the fight, even though it makes him weary, as it does many, but not everyone can self-advocate. Carers are often pushed to their limits, stretched between caring and advocacy.

Let's talk about some of the incredible people who I have come in contact with in the seat of Macquarie. I want to pay tribute to people like Gretta Serov, who in her late 20s has now completed a university degree, is a motivational speaker and has designed her own T-shirt with the message 'hands are overrated'. Greta has cerebral palsy and speaks using a voice-generating app on her iPad. She scuba dives. She has experienced indoor skydiving. She's a bit of an adrenalin junkie by the sounds of it! And she always maintains her sense of humour, and that shines through. Yet every time she has an NDIS review she has to appeal. Greta, like so many others, such as Bek and El, is an advocate. They deal with the challenges their own disabilities present and then they speak out so others don't have to experience the same humiliations and injustices.

Then there are the carers such as Rachel, who has fought the NDIA endlessly simply to get what her family needs to provide 24-hour-a-day care for her son Cameron, who has very complex needs. His big sisters are terrific carers, too, and the whole family deserves support to manage the additional needs that their much-loved brother has. Linda has stepped up to be an advocate using her experience of fighting for the very best early intervention and support for her daughter, Lucy. She helps others negotiate what is truly a complex system. Then there are the NDIS participants whose fight with the NDIA ended only days before tribunal hearings. They've argued and argued, and only now that's done can they get a good night's sleep. We need to do much better by all these people.