Interview with Ellen Fanning, from The Global Mail

This week, my wife and I were interviewed by Ellen Fanning from The Global Mail (theglobalmail.org) on the topic of the much-vaunted National Disability Insurance Scheme (NDIS). I’m no expert on the topic so my comments were based simply on my experiences as a person with a physical disability, and the parent of a child with autism. The full transcript of my answers is reproduced below.

[EF] What’s wrong with the current system – the way in which it operates from scarcity and in response to crisis rather than in a planned way?

[PB] Perhaps a better question is ‘what’s right with the current system’! It’s grossly underfunded, slow to react to need and unbelievably bureaucratic. The amount of time to fill in forms is mind-boggling. On one respite application alone, for our son, we spent at least 10 hours of solid work. Carers are notoriously time poor, but still we are expected to fill in these incredible forms, asking all sorts of detail about your personal lives, and if you dare be positive about anything, you will miss out on funding. For people who just want to get on with their lives, but need some support, it’s cruel and unusual punishment.

Every provider also asks for different information so you can’t use a database of answers. They even vary the forms from year to year!

The costs of disability are very significant. In the 10 years since I developed my condition, we have spent perhaps $100,000 on mobility aids, home and vehicle modifications. That’s not even including medical expenses or therapy, only some of which are covered by Medicare and private health insurance. For our son, we spend around $10,000 pa on therapy. Almost none of those costs are currently met by government. That’s the scope of the challenge for the NDIS.

[EF] Examples of how this happens and the result for the person with a disability and their family.

[PB] Last year, my wife had to go away for a few days. I don’t need a lot of help, but there are a few things I just can’t do myself – such as put shoes and socks on. I needed a helper for perhaps 10 minutes a day, for 4 days. As it’s hard for me to communicate instructions to the worker, I wanted the same person each day, not 4 different workers who needed new instructions each day. Apparently this type of help is unusual – most folks either need no help or regular ongoing help. Because it was unusual, Ruth had to make 8 phone calls before it was approved, handed to a provider, then a worker was allocated. It was just incredibly hard. Too hard.

There was no capacity for me to arrange it myself by email, for example.

Because my condition is a variation of Motor Neurone Disease, I joined the MND Society a couple of years ago. They offer some excellent services and support for members, including an equipment loan facility. This means you can borrow equipment you need, at no cost. I wanted to consider borrowing an manual lifter, which would have been useful in a variety of situations. However, because the prognosis for many people living with MND is relatively poor (3-5 years) and mine is relatively good (PLS is considered ‘lifestyle’ threatening, not life threatening) the society doesn’t have the funding to assist me. I will simply live too long to be a good prospect of returning the equipment!

[EF] What you would hope for out of an improved system? What characteristics would it have? How would having a better system in place change life experiences for folks with a disability and their families?

[PB] There’s been a lot of discussion about funding, and clearly that’s important. I think the estimate provided by the Productivity Commission was that funding needs to treble. I suspect that’s an underestimate. But also a big part of whether the NDIS is worth a candle is about bureaucracy and implementation. How can it avoid the brutal duplication and wastage that occurs now? How can it avoid making such demands on carers and people with disabilities, who it seeks to help? How can it change from being negative to positive?

There needs to be no difference between states. For example, when you need to modify a vehicle in NSW to accommodate a wheelchair, you get no assistance. The cost of modification is $25-30,000. In Victoria, you get $10,000. But NSW has a very good system of subsidised taxi transport.

There needs to be no difference between conditions. Currently, if you have an easily-diagnosed condition, that fits nicely into a well-funded and active society or organisation, you may get relatively good support. If you have a rare condition, or worse, you are undiagnosed, you are largely on your own. Support should be on the basis of needs, not diagnosis.

A new system needs to be as simple as Medicare, but spread over a huge range of very high cost services and products. My powered wheelchair cost $15,000, and now needs about $4,000 of custom seating adjustments. (That’s on top of two $5,000 manual wheelchairs.) And $15,000 is pretty cheap for a powerchair. The one I wanted, but couldn’t afford, was $26,000. I can’t see any government spending even $15,000 on a wheelchair without pretty massive bureaucracy. At the point I found myself needing a powerchair, I needed it soon. If I’d had to wait three years (or even one year) I’d have been unable to work during that time and would have lost touch with the workforce. It’s not uncommon to wait three years for funding under the current system.

A new system should not be means-tested, or at least with very generous limits. Many people with disabilities can’t work, or can’t find work. Those who can should not be discouraged from doing so by eligibility rules for support. The costs of disability are real and additional, whether you are rich or poor.

You can read the full Productivity Commission report here – http://www.pc.gov.au/projects/inquiry/disability-support/report

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