'You better make it look like an accident'.

Stella Young tells of a dark joke in disability circles.

“If you have an accident in a lake and you injure yourself then you had better get your friends to drag you to a car and make it look like an [car] accident. It’s a bit dark. But it’s true.”

That’s because people living with disabilities have never been treated equally. Never. Stella Young was born with her condition (osteogenesis imperfecta) which makes her bones more fragile. She’s been in a wheelchair all her life. She paid about $14,000 for her last one (the Victorian Government paid about $8000) while her friend of the same age with the same condition in another state has never had to pay for her chair.

Here’s where the National Disability Insurance Scheme (NDIS) comes in. Acronyms relating to government policy tend to make people glaze over, but here’s the thing: many are saying this is the biggest social reform in Australia’s history. Definitely on par with Medicare. Possibly even bigger. If it’s done right, it will not just transform the lives of people living with disability (and their carers) but the economy as well. News Editor Rick Morton asked disability advocate and furious knitter Stella Young for her views on the developments.

MM: This has been a long time coming. How long have people with disabilities been fighting for this?

Stella: Decades and decades. Some of the older activists say we have been talking about this for 30 years. Officially, it came up as a big idea at the 2020 Summit. Bruce Bonyhady, chairman and chair of Yooralla was one of the key drivers in those initial stages. He knows first hand the system is stuffed.

MM: At its simplest, what will the National Disability Insurance Scheme actually be, what do you want it to look like?

S: To me it looks like a system where disability has the least impact on a person’s life that it can have. That means early intervention. We hear about 2 year waiting lists for people to get intervention which, by then, is no longer early intervention at all. It’s late intervention and it’s not enough.

It’s about it [the disability] having a minimal impact on their life. With my wheelchair, disability doesn’t play a huge role in my life. But without it I would be crawling around everywhere, not be able to work or be the best person I could be. That’s what it’s about.

It will basically mean everyone with a long-term disability can access the support they need. It’s more like an assurance scheme than an insurance scheme.

MM: How is this different to disability support offered now?

S: Well, for a start, there is currently no nationally consistent scheme. It’s a mess.

Secondly, it’s no-fault. It’s a system that doesn’t care how or why you have a disability but will provide support based only on need. As it stands now, I pay for my chair where my friend in another state does not.

I’m pretty lucky that I can afford to pay. I prefer not to, but at least I am in a position to do so. But thousands and thousands are not.

MM: We hear the figures. About 1/3 of homes with a person with a disability live close to or below the poverty line. Depression in carers is about 44% more prevalent than in the general population. This isn’t a surprise, is it?

S: Not at all. One of the greatest problems with the complete lack of support as it stands now is not just for those of us with disabilities but for our carers, usually our unpaid family members, who worry and agonise about what will happen to us when they pass on.

There is a lack of security and confidence. I hear from older carers ‘we don’t know what will happen to our kids when we die’. That is a pretty bleak cloud hanging over their heads.

Mum said she was petrified about how I would get on in life until I grew up, moved away and went to uni and she relaxed and realised I could look after myself.

MM: I’ve read many say with funds going directly to the person with a disability, and them being able to spend it where they need it most, that this is one of the greatest elements of the proposed NDIS?

S: Absolutely.

There’s a great example of a girl with Downs Syndrome who wants to do a course but she’s not confident with using public transport to get there. So, part of her NDIS package would be training on how to use that system to get her where she needs to go. It’s an example of her specific need and a way she can help overcome it.

People with disabilities  often don’t have much flexibility in their life. There are people my age who have to go to bed at 7.30pm at night because that’s the latest time their support worker agency will send someone to help them with their routine. Sometimes if they want to stay up they just sleep in their chairs or where they are until someone can come again in the morning.

It’s kind of looking like that might change. There will still be limitations unfortunately, but it will be much more freeing.

MM: You’ve made the point that this is NOT the same as funding for the Disability Support Pension (DSP). How is it different?

S: There is so much in the media about people ‘rorting’ the disability pension and this will have nothing to do with that. That is income support and this is essentially life support. There will actually be less people on the DSP because the NDIS will allow them to get back into work.

Remember, we will have to build a workforce of support workers as well. The idea is to have support provided by people who are paid rather than unpaid families.

It will increase workforce participation exponentially. It will pay for itself in time. Well and truly. You just need the investment now.

It’s a great time to be alive. I’m thinking in another 30 years we’ll look back and say ‘back in my day we had to pay for our own wheelchairs’.

THE FACTS

Here’s how the scheme will work.

1. It will cost about $8 billion a year more than the states currently spend on disability.

2. Payments will be given to the most seriously disabled people in Australia, based on need.

3. It will require a system for assessing just who the most in need are.

4. Those people will be able to spend those payments as they see fit. They will no longer have to apply for limited numbers of payments or pay for services only offered in capital cities. They can make up their own mind about what support they need the most.

5. Some money will be allocated on vastly improving the disability support sector.

6. In doing that, competition in that sector will increase and dodgy operators will hopefully be squeezed out. The NDIS will provide choice.

7. The Australian Government has allocated $1 billion in the budget to start the scheme. It will begin next year, helping 10,000. The year after that it will expand to help 20,000. There are some 330,000 people with disabilities that require ‘significant’ amounts of care and support.

Stella Young is a writer, editor of the ABC’s website Ramp Up and a disability reform advocate. You can follow her on Twitter here (and you should). If you want to know more about her personally, check out this interview MM Publisher Mia Freedman conducted with Stella last year.

How do you feel about the NDIS … and will it help you or someone you know?