T’was 10 Days Afore Xmas

Photo is of a trades man in his orange trade shirt. His head is shaven and his sunglasses are on his head. He has a look of extreme surprise, even fear.

Xmas time is frantic. More so if you have changed jobs, have to move interstate and prepare your Adelaide house for the AirBnB market. Being deaf can make this a big challenge too. Luckily, I now have a captioned mobile phone where I can make and receive voice calls and this is saving me heaps of time. But there is Covid and all of the communication issues and restrictions that it brings with it.

To make matters worse, I have building repairs to do on my house in Adelaide. Luckily,it’s covered by insurance but its a big job. It took a long time to organise. The process started in June 1975 and the builders have just arrived today. I jest, it was actually June 2021, but it feels that long.

Last week I finally moved back to Melbourne for good. The last few weeks I have been toing and froing, It’s a real pain in these Covid times because each time I arrive back in South Australia I have to have a Covid Test at least 72 hours before I leave. Of course testing brings with it masks and masks with it communication issues. Most of the Covid Testers are great but some are kind of, to put it mildly, thick.

The simple thing is to show us the questions on the iPad, we then respond. Deaf who speak well can verbalise , those less confident in their speech type answers on their phone and so on. It is not rocket science. There is always this one person that thinks we can some how hear them and when it becomes obvious that we cant, they resort to pantomime that often makes no sense at all. Over exaggerated mime to show that they are going to stick something up your nose can be hilarious. More often it just gets on your nerves.

If you drive into Adelaide you have to deal with the border control. If you fly you are dealing with security, air hostesses and so on. All replete in masks requiring you to tell them you are deaf, cannot hear them and have to lipread them. The number that continue to talk through their masks, even when you tell them this, is mind boggling, A simple trip to SA, either driving or by plane, becomes a communication logistical nightmare. I don’t know about my Deaf and hard of hearing friends, but it leaves me feeling pretty exhausted.

Today, 15th December, was something else altogether. Let me tell you the tale.

I took off for Tullamarine at 5am. My poor and tired wife had to drop me off and then go to work. I got through security with not one of them willing to remove their mask to assist with communication and all of them trying to speak to me through their masks. One actually stood closer to my ear and, presumably, had a bit of a yell before realising that this was futile.

Jetstar staff were much nicer. They didn’t remove their masks but pointed to relevant things and helped me on my way. The flight was uneventful. I was surprised at how lax the Adelaide airport security was. No checks. They just waved us through. I headed to Hertz to pick up the hire car.

It was just my luck I got a trainee. But, she was brilliant. Again, she didn’t remove her mask. However, because it was quiet at Hertz I was able to use Live Transcribe on my phone. She spoke clearly to my phone so that her voice was transcribed. This allowed me to answer the relevant questions. She then took me to my car, pointed to relevant areas, showed me how to use the key and I was away.

Next stop was Covid Testing. Although I had tested negative before leaving one of the conditions of entry to SA is that I get tested as soon as I arrived. Once I am tested I am free to mingle. If I test positive I must immediately quarantine. Highly unlikely given that I am double vaccinated and just had a negative test but possible. So I drove to Bedford Park where the ever obliging testing staff just showed me the questions on the iPad for me to respond, swabbed me and sent me on my merry way.

It’s not yet 8am and I have navigated all of this. I set off for home where the builders are doing the repairs. As I leave the testing station my phone flashes. I pull over and use my trusty Google Pixel Captioned Phone to answer. It’s the builder, who has been told to text not call. He, of course, calls. Luckily, the captioned phones means that I can speak to him. His boss has neglected to give him the pin to the key safe. “We are at the front door mate”, he says. I give him the pin and let him know I had flown in, was getting tested and would be there soon.

It’s a beautiful drive to my house. Beautiful views of the sea, the sun is shining and all is right in the world. I arrive at my home and one of the tradies approaches me, replete with industrial mask. I assume this is because of the dust as he had been pulling off plasterboard.

I cheerily greet him. As I approach he tells me to stop. Big hand gesture telling me to stop. He points to me, he points to him and gives me a gesture that clearly says I’m not to approach any closer. He starts talking to me through his mask, of course. I let him know that I cant hear him and have to lipread. He starts a pantomime which is clearly a plane. Picture a little boy, arms outstretched, rocking from side to side in clear imitation of a flying plane. That’s our tradie.

So anyway, I says yes, I’ve flown in from Victoria. He starts talking through his mask again and shaking his head vigorously. One assumes he is saying NO … something. I tell him its no good, he will have to remove his mask so I can lipread him. He takes three steps back removes his mask and begins speaking,

I resist the temptation to pretend to need binoculars to lipread him. He asks if I have been tested . I tell him yes, on the Monday and that it was negative. I tell him not worry about me, I was just going upstairs to work. Meanwhile, his work mate is across the road looking across at me, very agitated and seemingly scared. I give him a wave and head upstairs.

I settle down to respond to staff and emails and all the things you do as a team leader. Ten minutes later there is a text from my tradie mate. He wants proof that I tested negative. So I come down stairs and he is sitting in his truck. I presume its smoko time. I find the SMS message telling me that I am negative and make my way to his truck.

He is a bit away with the fairies. I knock on his window. He turns round to see me and literally jumps back in fright. He gestures at me to go away, move back. This I do and he quickly gets out of the car and runs five metres up the road telling me to stay. His workmate has got out of his car and run even further up the road looking absolutely petrified. I give him another wave. To be honest, he looks like he might weep with fright.

Th tradie removes his mask. With a combination exaggerated lip movements and more plane pantomime tells me that I’ve been on a plane. He doesn’t care about my negative test. I might have caught Covid on the plane and that he is leaving. I point out that I am double vaccinated and even if I did catch it on the plane, I would not yet be infectious. I offer to leave and come back later.

He said something that lipread distinctly as “No fucking way”. He says that he will come back on Saturday and finish the work. By this time I am thoroughly fed up. I tell him to do whatever he likes and that I was heading upstairs to work. And that’s what I did. He and his mate left too, leaving behind a very expensive ladder and some tools. Presumably, because I may have touched them and they would catch the dreaded virus from them. I am in the mood to put them on Ebay and make a profit, that’s how fed-up I am.

About half an hour later I get an email from the tradies boss. Basically berating me for putting his staff at risk. I email back stating that this is incorrect, that I have followed all protocols and am not required to isolate. Point him to the relevant internet pages to consult and resist the temptation to tell him to go fuck himself.

To his credit he emails me back. tells me I was absolutely correct and that I had done nothing wrong. He says in the interest of safety, his team will return on Saturday, when I am gone.

And that, dear readers, was my day. Merry Xmas! – I think. Oh, and a little later I got my third shot! GO ME!!!

Xmas Spirit – An Open Letter to the NDIS

Dear NDIS People and Partners

Image is of a cartoon Santa. He is smoking a cigar and holding a sign that says Bad Santa

Merry Xmas NDIS people. I wish you all good tidings of Xmas and the new year. I wish this open letter to you all could be in better spirit. Alas, the NDIS seems to be lacking in Xmas spirit at the moment if recent decisions are anything to go by. In fact, the NDIS seems to be lacking in any spirit at all in its hell bent quest to cut costs.

I would like to tell you a story. You see, I once worked as a Senior Local Area Coordinator. For a time I was even a Senior Planner within the NDIS on a short term contract. I like to think that I was a very good planner. Since leaving the NDIS I have been very outspoken about ongoing failures of the NDIS. So much I that I fear I have been blacklisted, never to be employed again.

I started in 2016. I was employed as part of the second roll-out to the North East Metro area of Victoria. It was an interesting time because the NDIS screwed up a change over of their CRM system. Full records of participants did not transfer over to the new system. It was chaotic as no one knew what funding was left. Services could not be booked, let alone paid. Indeed the crisis was so bad that some services closed down because they could not generate any cashflow to pay themselves and staff.

The crisis lasted about 8 weeks. Eventually things returned to normal and we began planning. As a newbie it was a sharp learning curve. Not only was it a sharp learning curve for me as a worker in a partner organisation, it was a sharp learning curve for people that worked in the NDIA offices too. Many of us were new to the NDIS and had to learn the rules and legislations of the NDIS very quickly.

For a time we even shared offices with delegates from the NDIA. It was great because we could sit down with them and talk about plans and client needs. We could explore the legislation together and discuss Section 34 and how it applied to decision making. All of us had a copy of section 34 on our desk, it was our bible.

My second ever plan is still my favourite. She was a young woman studying to get into the medical field. She had cerebral palsy and had personal care needs. She attended university and until she had applied for her NDIS her mother was her full-time carer. Her dad pretty much her full time taxi.

Mum would attend the university and carry her books to class. She would attend to her personal care needs throughout the day. Toileting, getting food from canteen, assistance with feeding and so on. The young woman was a full time student. The commitment from her mother was huge.

She had friends at university too. She would go out with them. Dad would drive her and I think her friends, between them, assisted with her personal care needs. Her family were brilliant. The young woman wanted for nothing.

In the mornings mum helped her get ready. Got her books ready, dressed her and breakfasted her. Then dad would drop her and mum at university and the day began. This commitment from the family had been going on for two years. It was a joy to behold.

Like most young people the young woman wanted some independence. She didn’t want to have her mum and dad with her wherever she went. She wanted to live life on her own terms. It is not that she was not grateful for her families support, it was just that she was young and wanted some independence and privacy.

I had a great relationship with her family. When I visited they always fed me. They were from a CALD background and they would feed me with exotic curries and treats. When I left mum would slip me goodies like samosas and curry puffs.

One must also consider the toil on the family. Mum couldn’t work because she was virtually supporting the young woman full time. She didn’t complain, she just saw it as her motherly duty. When I worked in the NDIS field I met many, many families like this. The level of commitment they gave was immense.

The young woman wanted to be able to attend university without the constant presence of her mother. Her mother was quite happy to continue with the support she was giving but admitted that a bit of time for herself would be wonderful. The young woman also wanted to be able to go out with her friends without her dad hovering around.

The young woman also wanted to leave home eventually and wanted to prepare for that. She wanted carers who were not her family. She wanted to develop some skills that would enable her to be as independent as possible. She wanted to identify technology that would enable her to cook for herself and be safe in the kitchen. The NDIS plan that she required was quite substantial and needed to cover her time at university, time at home, time in the community and her capacity building requirements.

I was lucky to be sharing an office with NDIA delegates. We discussed the young woman’s needs at great length. We agreed that the care needs on campus were the NDIS responsibility. We agreed that the share of care that the informal supports had taken on (mum and dad) was not really sustainable. We also agreed that it was completely feasible that the young woman wanted to develop capacity to be as independent as she possibly could in preparation for moving out of home. There was even some support required at home to assist with preparation, scribing and getting assignments done.

All care needs on campus were funded. A carer to assist the young woman get ready in the morning was also funded. Assessments were funded and therapy was funded to build greater capacity leading to greater independence. Transport was funded to get her to University, home and to be able to socialise independently. Her needs to complete university assignments such as scribing while at home were also covered,

It was a great plan. It all fitted in with section 34 of the Act. The plan allowed for community and economic participation. The plan allowed for capacity building towards independence. The plan acknowledged she was a fulltime student and therefore qualified for level 3 transport. The plan acknowledged that the level of support provided by informal supports was not sustainable and that the informal supports needed to be supported so that they did not break down. The plan acknowledged that informal supports also needed to participate in the community and that the level of support that they had to provide did not make this possible. All of the above are justifiable under Section 34 of the Act. Approving it was a no brainer.

A happy story. One that shows the potential of what the NDIS can provide when people know what they are doing and interpret NDIS legislation correctly. Indeed, none of the above is rocket science. Sadly, it seems, that if this young woman had tried to get this level of support today she might be denied.

Recently I received an email from an access and inclusion officer at a university in Queensland. This is what they said of some students at the campus, “…. They were advised that NDIS will not cover on campus personal care or off campus educational support (such as a support worker when at home to help with highlighting and organising notes, organising folders, assisting with scribing and handling notes for assignments etc).”

I despair. What are these delegates doing? What justification do they have to deny this support to a person with a disability that requires it so they can participate in university? I can tell you that they have absolutely no justification whatsoever – NONE!

Let’s be clear. A university’s job is to teach. It provides all the necessary things for a student with a disability to learn while on campus. Auslan interpreters, captioning, wheelchair accessible venues, assistive technology, extra times for exams and so on. A university is also responsible for providing accessible amenities like parking, toilets and the like. That is their responsibility!

Every student who does not have a disability that attends university cares for themselves. They feed themselves and look after their own hygiene. This is not the university’s responsibility. If not being able to care, feed or look after ones hygiene will preclude someone from participating at university and campus life this is where the NDIS comes in. If its not to do with learning it is not, I repeat, IS NOT, the university’s responsibility. It is, I repeat, IT IS, the responsibility of the NDIS. A responsibility that is clearly outlined in section 34 of the ACT, that allows community and economic participation. It is not rocket science.

I know not why these students with a disability are having their funding cut for care needs on campus. If delegates are ruling this they should not be in the job. If Local Area Coordinators are refusing to ask for it in plans, they should not be in the job. If it is directors, the CEO or the Minister directing people to not fund this care, they are in breach of their own NDIS legislation!

I have no doubt these students who are being denied are going to review the decision. It’s going to take three months or more for their review to be dealt with. In the meantime how will they study? Possibly, even after the review, the NDIS will stubbornly refuse to change their decision and this will necessitate an appeal to the Tribunal at great expense.

What is worse is the appalling stress and barriers that these ridiculous decisions are placing on the students. What is worse is that the NDIS are messing with the dreams and aspirations of these students with disabilities. It is disgusting!

So to the NDIS and its partners I say merry Xmas to those of you who constantly strive to do the right thing, and there are many. To the others, take a long hard look at yourself, you are in the wrong job, just get out!