Apparently, Price Waterhouse Coopers (PWC) found that mental health has overtaken the cost of living as Australia’s biggest concern during the Pandemic. The Sydney Morning Herald Editorial, July 20th, 2021 highlighted this issue. It listed numerous reasons for this. Kids at home being bored, parents juggling work from home with home schooling, being in constant close proximity of each other, isolation, boredom and so on. All of these things had, and continue to have, an impact on our mental health. Apparently demand for Mental Health Services has not increased all that much during the Pandemic. It is attributed that this is because people choose pretty much to go it alone and not seek help. I wonder if this is the same with the NDIS.

People may scoff at the suggestion that the NDIS is adversely impacting on disabled peoples mental health. If you are a regular reader of the NDIS Grassroots Page you will come across many people posting comments despairing at the decisions that the NDIS make. Often there are angry posts about delays, cuts in funding, need for constant reviews, lack of communication and so on. The uncertainty of process and the complexity of the NDIS system are causing anguish to people with a disability. It is very real, even traumatic.

I assist quite a few people who have been “shafted” by the NDIS. I realise that this is a strong word but sometimes that is how it feels. The first one that I ever assisted came to me in tears. Like a lot of people with a disability she has had to fight for many things. Whether its education or equal access and inclusion at work she has had to fight for it. She, like many of us, expected that the NDIS would be on her side. To find that it wasn’t came as a big shock.

So anyway, she came to me in tears. She is deaf and received a bizarre plan. It totalled $5000, of which half was to fund a plan manager. There was about $1800 for an assessment for low cost technology that had been funded to a total of $800.

Let’s be clear on this. Of a plan of $5000 only $800 was allocated to purchase anything of value for my friend. The rest was going to a plan manager and someone to assess how she could spend that $800. Her expectations of the NDIS had been high. To get such a pathetic plan was like a dagger to her heart. She was rightly upset. She needed interpreting, she needed technology, she needed communications devices as well as OT support to identify the technology that she required. The $800 did not even scratch the surface of what she needed. Hence, her tears.

We went for review and put in a complaint. She was understandably reluctant to even do a review. She didn’t want to have to face the trauma of being knocked back again. Luckily she did and upon review she received a much improved plan. But at what cost? Not just money and time but stress and worry on her part. It should not be this way.

I wrote about this in The Rebuttal last year. On publishing this article I received an influx of requests from people, mostly deaf, who had received terrible plans. Reviewing these plans is not a straight forward thing. It often requires more reports. More visits to the doctor. More visits to the therapist. It requires many hours to carefully craft reviews in such a way as to get the NDIS to change their mind. Mostly, it involves frustration and worry for the participant. It is demeaning to have to constantly justify your needs because people in the NDIS stuff up.

Some of the decisions are just pig headed. Not helped by the fact that decisions are inconsistent. Many deaf people are requesting a system known as Visualert. They want this system because it provides them with a high degree of safety in their home. It provides them with visual alerts to the fire alarm, the doorbell and even CCTV. It does this through a system of colour coded alerts that are hard wired so that the Deaf person knows whether it is the fire alarm going or the doorbell ringing.

It is my strong view that this is one of the best systems on the market. Not only that, it is a system that gives the highest amount of safety. It is more expensive than other systems but you get what you pay for.

Legislations state that hearing people must be able to hear an alarm from various points in a home, including outside. It follows that a visual alert system must be seen from as many areas of the home as possible, including outside.

Recommendations for alarm systems are that they be hard wired and with back up battery should there be a blackout. They should not rely on power alone. They should not rely on batteries alone. They should not rely on the internet or wearing of a pager that can be broken or forgotten. They have to work ALL THE TIME!

Visualert is the system that best meets this need, in my view. It is why it is being increasingly recommended by occupational therapists. Some people are being approved, most not – because the NDIS deem it as too expensive. What price do you put on human life? I ask you.

I am assisting a few people to appeal who have been declined this system. They are are being made to jump through hoops. What surprises me is that I have witnessed NDIS lawyers actually lying on behalf of the NDIS at AAT.

One lawyer claimed that they had appointed their own occupational therapist to gather evidence. They claimed that they were going to fly them interstate to carry out the assessment in the persons home. This was an outright lie. At all times they have suggested, by email, that the assessment would happen online. (The participant successfully argued that an online assessment was not appropriate and that it needed to happen in the home.)

Upon being directed to find someone in that State to do the assessment in the home, the NDIS delayed finding someone. They had to be reminded that they had been given a three week time frame to do so. They found someone then emailed and said that person couldn’t do it anymore and reverted to their original therapist and doing it online. When told they had been directed to find someone to do it in the home they claimed that they had only been told to, “Explore the possibility.”

This whole process has taken 5 months and is still going with no end in sight. Meanwhile, the deaf person has no safety at home. They are stressed and they are constantly being told to attend meetings, give up time at work and to no avail. Imagine the impact on their self-esteem that the NDIS will quibble over a few thousand dollars on the matter of their safety. Yet, the NDIS will spend millions to try and win cases at the AAT – A large proportion of $23 million last year it seems.

The other big thing that the NDIS often do is deny Auslan to families and individuals. Sometimes they give it and then they take it away. They give any number of bizarre reasons for it. They will say that its the Education Departments responsibility. They will say it is a parental responsibility. They will say the family need to pay for themselves to learn. They always fail to understand that Auslan is a language that can be crucial to human development. Particularly for young deaf kids.

I have had some success in getting Auslan restored for families. I do this by getting strong reports that outline the language milestones, psychological benefits, impacts of interacting with family on language development, consequences of delayed language development and so on.

One time we got $8000 of funding restored because, apparently, the NDIS had just forgotten to put it in the plan. Imagine the parents despair at having to spend $5000 of their daughters plan on new reports because the NDIS forgot! Notwithstanding the unnecessary expenditure! Worse, the delay in language development in the child and the cruel stress and worry that they have placed on the parents. It is unacceptable.

In a recent case I have been supporting a person with multiple disabilities to have their Auslan funding restored. They are mostly bedridden. They are deaf and they sometimes, in moments of stress, lose their function of speech. They wanted Auslan so that they could communicate smoothly with their family and support workers, particularly if they lose their function of speech. This can happen at anytime.

Obviously, not being able to communicate causes them a great deal of anxiety. The anxiety means that they are constantly on edge. It exuberates some of their existing conditions and can make them quite ill. Auslan is their safety net. They, their family and support workers need to learn it as an alternate communication method.

But Auslan funding was removed. Bizarrely the NDIS delegate deemed that learning Auslan was harmful to the person. The NDIS said that learning Auslan would make the person more stressed and tired. In turn this would worsen their condition. They justified this with the argument, and I kid you not, that interpreters are only allowed to sign for an hour at a time.

And so begins the fight to have the persons funding restored. Meanwhile, the stress and anxiety being placed on the person is impacting on their health and mental health. Meanwhile, by cutting the funding this delays the learning of a much needed alternative communication for the person and their family. Why? Because the NDIS are seeking to cut costs based on a value judgement that has no basis in fact!

It is a disgrace, probably not helped by the fact that the Auslan service provider quoted near $9000 to support this person learn Auslan. Greed or bad management on the service providers part? – Whatever the reason, $9000 seems excessive to me.

These are just some of the real life situations that people who are deaf and their families are confronting everyday through the NDIS. The stress and the impact on their mental health is very real. Many actually just give up because the stress is just too great.

They have been fighting all their lives for minimal gains in access and this makes them feel extremely undervalued, even a burden. That Australia’s premier disability program is doing this to them is the last straw. It is a national disgrace!

I leave you with this cry of anguish posted on the NDIS Grassroots Page – It is printed with permission –

To The NDIS I have committed the most heinous of crimes.

My crime being a Person with Multiple Disabilities.

Guilty on all accounts. I don’t deserve to be treated with equality!

I don’t deserve to be alive. 

I no longer contribute to society as I once was able to as an able bodied person. 

I don’t deserve services from allied health professionals, support workers. 

I don’t deserve to be treated as a whole person. 

I don’t deserve to be listened to and heard. 

I’m defeated! I’m tired, I am mentally, emotionally and physically drained.

I am a bludger, I am a burden, 

How dare I wish for quality of life, to be part of community. 

I am an empty shell. 

Don’t worry I am completing my Advanced Health Plan. 

NDIS. You will be pleased to know that I opt not to be revived. 

This is how far I’ve been pushed.

I thank the person for allowing me to publish this. I dare say many in the NDIS, including the Minister, don’t care. One less is one less cost. !