The Disability community fought hard for the NDIS. I remember attending many rallies. I responded to many petitions, completed many surveys and raised the issue of the need for the NDIS through my work. I remember the then Chair of Australian Federation of Disability Organisations, Dean Barton-Smith, at one rally pointedly stating to the crowd. “The time for talking is over … “ Eventually the disability community won and the NDIS came to reality in 2013. It was a win for the ages.

How wrong we were. The NDIS was created because it made economic sense. By introducing the NDIS and investing in disability, people with a disability could finally be equal members of our society. The investment in disability was to be an economic boon. Not only would it mean that people with a disability could finally get out into the community but their carers and families could also be supported to get back to work through the funding of additional support. Jobs would be created through increase demands for support, care and technology. Being able to get out into the community would mean people with a disability could spend money participating, going to restaurants, working and studying, just like everyone else.

Indeed the initial modelling of the NDIS highlighted this fact. The late and great, Mark Bagshaw, used to say that simply by ensuring disability access was an integral part of planning for the introduction of new infrastructure to society such as planes, trains, buildings etc so that they were accessible for people with a disability, the economy could benefit to the value of $43 billion. That was in the late 90s and early 2000s. How much would it be now?

The NDIS was partly created for this reason. Investment in people with a disability, PROPERLY, will benefit the economy. It does this by making sure people with a disability can participate. It does this through creating jobs and opportunities. Governments are always happy to spend billions of dollars on roads because it creates jobs and stimulates the economy. For some odd reason when it comes to investing in a similar way in people with a disability its no longer an investment. It becomes an unwanted cost.

It shows just how the Government really values people with a disability. They think people with a disability are second best. This is shown in how the NDIS makes decisions. The NDIS do not want to invest – They want to make it as cheap as they possibly can. They think that in this way, by spending less, the scheme will be sustainable. The reverse is actually true. I want to highlight here some glaring examples of just how the NDIS views second best as BEST!

When I worked as a Senior Local Area Coordinator I worked with a number of amputees. One lady I worked with had a lower limb amputation. She needed to upgrade her prosthetic. Hers was very old. It was worn out and sometimes fell off. She lived in a house that had a fairly steep drive way. More than once she had been walking down the driveway and her prosthetic had caused her to fall as it was no longer stable. A few times it had, apparently, fallen off all together while she was out shopping. It had got to a point where she feared leaving her house. It was causing her extreme anxiety.

When I met her she had been trying to convince the NDIS to fund her a prosthetic that had a microprocessor. She showed me a promotional video of the prosthetic. It showed a person being able to walk over uneven terrain. It showed them riding a bicycle. There was also a kind of secondary prosthetic that could be worn when swimming.

I am no expert in prosthetics. I am also aware that sometimes companies can exaggerate benefits. I also know that there are some disadvantages that include maintenance, charging and weight. Watch the video below. It will give you a small idea of what such prosthetics can do.

 

The participant was well informed. She wanted a microprocessor prosthetic. Indeed she had numerous reports from various OTs that also recommended the prosthetic as most suitable to her lifestyle. The NDIS wouldn’t approve it. They wanted her to have a cheaper fixed type prosthetic. Whoever their expert was didn’t feel the benefits of the microprocessor were enough to justify the cost.

The participant was adamant. This is what she wanted. She had the evidence of the benefit and she had jumped through every hoop that the NDIS had asked her. But the NDIS still refused. The participant was virtually housebound because the prosthetic that she had was unsafe. Her anxiety was so high that she feared leaving her home. This had been the case for over two years. Still the NDIS refused.

Anyway, she got fed up in the end. She emailed everyone from the NDIS minister, to the Prime Minister, the local MP, the media and god knows who else. She created a bit of a shit storm. I left my role shortly after, I still do not know the outcome. But I do know that she was virtually housebound for two years because the NDIS wanted the lowest cost possible rather than the best possible benefit. Second best is what they wanted. Second best is how they treated the participant.

I do not understand this approach. What I see is a technology that can assist the person with a disability to get out into the community. I see a technology that will enhance independence. I see a technology that will allow the participant to do things that they want to. I see a technology that will enhance their self esteem and self image. Further, by investing in this technology so that more amputees use it it is likely to see costs come down and the technology improve over time. But not the NDIS – They see only cost and how they can reduce expenditure as much as possible.

More recently Deaf people and people who are hard of hearing have been fighting with the NDIS over visual alert systems. Many prefer and are recommended a system called Visualert. I have never actually seen it myself but I know many want it. If you watch the video below, you begin to see why. (The captions send you to automatic French captioning , don’t ask me why.)

 

In Australia smoke alarm legislation is very strict. For hearing people the alarm must be heard from wherever they are in the home. The alarms must be placed where they are likely to be heard. If you have a two story home, alarms must be upstairs and downstairs. If your bedrooms are a long way from living areas it is recommended that alarms be placed in bedrooms or at least outside bedroom door. Alarms must be hardwired and have back up lithium batteries should the power fail.

It follows that Deaf people and people who are hard of hearing need a similar system. It needs to be hardwired. It needs to be seen wherever you are in a home – Outside and in. It cannot rely on batteries or remembering to wear pagers. It must alert you wherever you are – living room, kitchen, bedroom, toilet etc.

Visualert can be connected to other things such as the doorbell, baby cry alarm or security systems. If you are outside the system allows you to know that someone is at the door. If there are intruders you can be alerted that someone is prowling outside and so on. Unlike hearing people, Deaf people and people who are hard of hearing cannot hear their dogs bark or if there is a disturbance. Like hearing people Deaf people and people who are hard of hearing want to feel secure in their own homes.

So OTs and audiologist around Australia have begun to recommend the system because it keeps Deaf people and people who are hard of hearing safe. The NDIS is refusing them. They want them to install cheaper systems such as the Bellman system that rely on batteries, pagers and WiFi. These systems do not meet the same strict safety requirements that hearing systems must meet – No matter, we are just Deaf or hard of hearing – We are second best so second best is fine!

I don’t know about you but I am tired of our government making decisions about the NDIS that are based purely on cost. You see spending less may not actually lead to the NDIS being sustainable. It may actually lead to NDIS packages for people with a disability that are next to useless and money being wasted. Worse, it may not actually improve their circumstances or ability to participate. Or indeed, as we have seen, their safety.

I do not know about you but I am tired of being treated as second best – Nor do I want second best. A second best NDIS is of no use to anyone!!