The Rebuttal

The National Disability Insurance Scheme (NDIS) is an enigma. You love it or you loathe it. When it’s good, it’s very good. BUT, when its bad it’s dreadful! In my time in the NDIS sector the most frustrating thing was the amount of time it would take to make a decision and the stinginess of some Delegates who approved plans. In my experience there were many who lacked experience in disability and who saw their roles as gatekeepers of the public purse. For these people their sole aim was to keep plans to the lowest cost possible – (Cost effective plans they called it.)

My first Deaf plan when I started as a Senior Local Area Coordinator was for a guy who needed to upgrade his cochlear implant processor. His processor was old. He wanted the newest one with all the benefits it would give him. We were all new at the time as it was the beginning of the NDIS roll out in 2016. We lacked experience, because of this I probably made a hash of it. Short story, Delegate declined the upgrade because there was not enough evidence.

So I tried again at review time. This time with all the reports and evidence needed. I felt sure that it would be approved. It was not declined but the delegate kept asking for more information. A decision had still not been made 12 months later going into the participants third plan. By that time I had moved onto the agency as the Senior Planner and another Local Area Coordinator had taken over the plan.

This is where it gets really weird. The Local Area Coordinator, for the third time, requested an upgrade. By now, as a Delegate, I was actually approving plans myself. One day another Delegate, who knew me from my time as a Senior Local Area Coordinator, contacted me about a person wanting a cochlear speech processor upgrade, they wanted advice. Blow me down, it was the same participant who I had been trying to get an upgrade for all those years back. I explained the situation to the delegate who approved it on the spot. Excuse my French, but the whole process took three years – FOR FUCK SAKE!

I hate to say this, but I think Deaf and HoH people often get a raw deal with the NDIA. My favourite (read worst) was the Delegate who questioned the need for Auslan interpreters in a plan because, and this is a true story, the Deaf person could carry post it notes with them and have people write notes to them. No, I am not kidding.

The biggest issue, in my view, is the NDIA’s attitude towards approving new hearing aids. It SUCKS, pure and simple.

Now, people with vision issues wear glasses. They wear glasses to correct their vision and see better. Not everyone has the same vision loss. This is why people are prescribed different glasses. Us glasses wearers have all tried a friends glasses and gone, “WOAH”. This reaction is because of the difference in what people can and cant see is immense. It is, in fact, quite dangerous to wear wrongly prescribed glasses and can cause nausea, fatigue, blurred vision, headaches, and even vertigo; among other things. This is also true for people with a hearing loss who have poorly prescribed hearing aids.

In my view, the NDIA is hell bent on having people who are Deaf/HoH accept standard hearing aids because such hearing aids are cheaper. Sure, you can program these hearing aids to a persons hearing loss, but often this is not enough. Many people who are Deaf/HoH are prescribed certain hearing aids to match their hearing loss and life style. These can be pricey and the NDIA, more often than not, declines them.

This is dangerous. People choose hearing aids dependent on their life style. For many in the Deaf community hearing aids don’t actually aid speech perception all that much. Rather, they can help to enjoy music or even improve lipreading by giving access to sounds. For example, “PAT” and “POT” look very similar on the lips. Just hearing the A or O can help with lipreading. For many, hearing aids give access to music and environmental sounds providing them with a sense of connection and security. Being able to catch the bass of music can provide many with deep pleasure. Certain hearing aids can be more conductive to this need.

People more on the HoH spectrum require hearing aids to optimise their inclusion in diverse environments. At work, for example, they may need a hearing aid that adapts to the environment that they are in so that communication is optimal. Bluetooth capability might provide them with avenues to cut out background noise and be able to communicate better with work colleagues. Such hearing aids may have directional microphones or even artificial intelligence (AI). Hearing aids with AI can be programmed to smart phones to allow the user to automatically ‘hear’ in the most optional way that they desire.

The thing is, the NDIS was set up so that participants could participate in the community better, both socially and economically. Sometimes by investing in the most optimal technology for the individual this allows this to occur at a higher level. SO, if you invest in the better technology it will allow the person to participate better at work and in groups. It might allow them to enjoy music and encourage them to get out and about.

There is a multiplier effect in all this. When a person is confident and motivated to participate, they don’t do it alone. They bring their friends and their family. Money is spent in the community. This creates income and more taxes, which in turn helps to fund the NDIS. Just imagine a huge percentage of 6 million Deaf and HoH people in Australia who have hearing aids that meet their needs and that give them the confidence to participate. It means these people are more likely to have positive mental health and they will be less reliant on others. Surely, this is an aim of the NDIS?

A good hearing aid might make all the difference. But no, the NDIA only want you to have standard ones, if they will fund hearing aids at all. This stinginess and shortsightedness does more harm than good. Deaf and HoH people are made to jump through hoops. They are made to do trials and submit endless reports.

This process takes literally forever and it does enormous harm. A friend who lived in a regional area has been trying to get new hearing aids since the NDIS rolled out to their area. Before that, they had just bought new hearing aids themselves. Like a lot of people, they were very excited at the idea that the NDIS would get them new hearing aids. Like many they had a specific need.

Alas, it’s 2023 and she is still trying. Said my friend, “… A colleague used to try and get second hand ones from dead deaf people and see if they would sell the aids to them every few years because they couldn’t afford the new hearing aids.” This is the type of crap that the NDIA is causing with their stinginess and procrastination.

The worst thing is the impact this constant jumping through hoops has on ones mental health. When you have a disability you constantly have to justify what you need. Whether it’s support at university where you have to provide evidence of disability or whether it’s just to get the disability support pension, we Deaf/Hoh and disabled have to prove over and over again that we are not pulling peoples’ legs. This is often at great expense. But worse, it is an affront to our dignity.

Many professionals that provide the evidence and reports are not the most empathetic of people. They can sometimes make us feel like shit. My friend puts it best when describing being tested for new hearing aids:

“It’s a pass or fail. You fail, you get these looks. ‘You are deaf, but that deaf!! Tsk tsk’ , you need to try this or that.. You already know what you need but no no, they want to test to make sure and get you to hop hop hop til you fall.“

Yup jumping through hoops! And god forbid if you decide to appeal all the way to the Tribunal. The NDIA will screw every last inch of your dignity out of you. Just today the Saturday Paper headline screams, NDIA USED THE LAW TO EXHAUST PARTICIPANTS. The article pointed out that there are some people within NDIA who have admitted that certain people within the agency were more focused on money than meeting need:

““In our experience, many of the decisions which appeared to be in conflict with expert evidence were based on the decision-maker focusing on the sustainability/costs of the scheme rather [than] the validity of requested supports according to law which requires a holistic consideration of all the elements in section 34(1) of the NDIS Act“

I have supported a number of Deaf/HoH people to appeal through the Tribunal. I can tell you now that many of the lawyers who were assigned by the NDIA to these appeals were beasts. They often used language that was beyond the participants comprehension. They gave no reason as to why a decision was denied beyond that there was not enough evidence. They would drag out the case as long as they could in the hope that the participant would pack up and go home. Many did give up, it just became too exhausting.

The NDIA now claims that, as the result of their own review:

“We are focused on improving fairness for NDIS participants; providing better and earlier outcomes to reduce the need for matters to be considered by the AAT and reducing the reliance on external lawyers.”

Well, I hope so. Because the damage that they are doing to individuals with a disability is very real. The NDIA review report is due out at the end of the month. I hope its good, because some current practices are beyond cruel.

They have to do better!