This week, two years ago we celebrated the dawn of a reform that finally provides opportunities to people with disability to be included in every part of community life. It was a day in which we as a nation made a statement that we would accept people with disability, Australians that we had so long ostracised and denied. On July 1 2013, the National Disability Insurance Scheme first came to life.
Born out of one of the strongest grass roots campaigns in Australian history, the NDIS made Australians feel immense pride in being a world leader in addressing the long neglected needs of people with disability and their families.
It was a campaign born out of frustration with the previous state-based system that was characterized by a chronic lack of funding and executed in such a way that it excluded people with disability and their families from the community, by placing us in institutions or leaving families to cope alone.
During my personal experience of working in the state system for 20 years, I encountered a large number of people with disability and their families who were left languishing on waiting lists for services with no end in sight.
Samantha* is 28 and has both cerebral palsy and epilepsy. Although Samantha is non-verbal, she has communicated her frustration of waiting for essential supports for five years, as have her carers Anna* and Jack*.
“We are extremely worried about what’s going to happen to Samantha when we’re gone”, Anna told me recently.
“For any support you have to wait, I had an operation and Jack had to drop everything and do all the support full-time. Recently Samantha needed a new wheelchair and we had to wait two years. The impact on our family was enormous.”
Even people who do get services through this system often feel trapped, like Chris* who has an intellectual and physical disability, and his mum Jane*.
“My son and I have been locked in a relationship that we’re deeply unhappy with for five years. A large amount of money has been spent on not meeting our needs. We’re simply not heard,” Jane has said.
“There’s no customer service and no way out. I’ve complained, I’ve done everything, but nothing can be achieved to improve my son’s life. I’m constantly frightened of retribution when asking again if my son can have the simple things previously denied. I can’t even imagine a system where we’re in charge.”
The NDIS a solution
The NDIS was set up as a solution for these types of challenges that Samantha, Chris and their families as well as hundreds of thousands of other Australians face every day. The two most significant reforms in that solution are that people with disability can use the NDIS when they need it, and secondly that people with disability and their families are customers not recipients of supports.
Living, not existing
The first reform means there are no waiting lists for people with disability qualifying for the scheme. Many people with disability have been locked into a life without hobbies, interests, jobs or romantic relationships. It’s not living, it’s an existence. Also there are many families who are ageing and frightened of what will happen when they’re not around to support their son or daughter because the waiting lists are so long and there’s no guarantee of support when your family is gone. It’s hard to imagine what this would feel like as a parent.
Dignity and respect
The second reform is that people with disability and their families will be treated like a customer. This is essential to ensure individuals and their families are treated with dignity and respect.
Whilst the principles are clear for all to see, the road ahead will not be smooth. The reality is that it will be incredibly difficult to develop a scheme that satisfies every single person. Detractors of the scheme say, ‘it’s expensive’ and while not wanting to downplay the significance of the investment required, it can be overcome. People with disability and their families want support, not, ‘you’re too expensive and too hard’.
The whole community needs to be involved in this grand partnership including the government, people with disability and their families and service providers. We must continue to keep the NDIS in a bi-partisan space and work with what we have in common. Only then can Australian society become a place where having a disability is no more unusual than the difference between individuals, as remote as this may seem right now.
For our part, Australian Federation of Disability Organisations will continue to represent the interests of people with disability and work alongside the NDIS to transition out the things that separate people with disability from the community, in particular, the segregated models of the past, special schools, sheltered workshops, day services and institutionalised accommodation.
The truth is that two years ago when Australians everywhere signed up for the NDIS they signed up for both the vision of including people with disability in the community and the investment in our future.
Matthew Wright is Deaf and a part of Australia’s signing Deaf community and the CEO of the Australian Federation of Disability Organisations. He is a fellow of Leadership Victoria’s Williamson Community Leadership Program.