Just about everyone hates 2020. It’s just been a crap year for most of us. The ruddy virus has played havoc all over the world. Deaths, lockdowns, panic and fear have been at the forefront of all of our lives. I have sometimes hated 2020 too. It separated me from my family for six months for a start. But it’s not all been bad. in fact 2020, in many ways, was the resurrection of Gary.

If I look back, 2019 was my Annus Horriblis. It was a year that I went into a deep depression. It was a reactive depression to things happening at work. I was bullied and I was gaslighted. I was treated with awful disrespect. It took me many sessions with my psychologist to accept this and to stop blaming myself. It wasn’t just me  who suffered, it was also many of my workmates. As their senior I sought to protect them as much as possible. In the end it became too much and I broke down.

A toxic workplace is the worst place to be. When your manager abuses you its awful. When you sit in meetings listening to your leadership team put down the people they are supposed to be leading it is demoralising. Hearing a fellow leader screaming about a work colleague being a liar and unprofessional is not a nice place to be. She screamed, “I dont care if she hates me, she is a liar, she is unprofessional, I just dont care what she thinks of me.” Hearing your manager call. people weak, lazy, childish, incompetent and so on on a daily bases is demoralising. Hearing a leadership team member telling you that a struggling colleague, ” …brought it on themselves.” and having colleagues coming to you in tears because of abusive phone calls from the manager is no way to work.

Last week a former colleague was chatting to me on Messenger. She had been on the phone to one of the workers that had copped it in this toxic workplace. The worker told my former colleague that if I had not been there protecting them and supporting them that they would not be of this world today. That is how bad it was. It was a sobering reminder of that awful time and just how terribly toxic the workplace was. No one should have to work in that sort of environment.

At the end of 2019 I got a new job. It took me back to a role that I know well. Advocacy, education, employment and creating positive change. It is a role that I strive in.It was helped by having wonderfully supportive colleagues who always had my back. It is helped by having colleagues who respect your knowledge and seek your advice and expertise. It is helped by kindness and having a workplace that puts people first and supports them to the hilt. I am thankful for them because they helped me heal and rediscover myself.

What a year it was. The virus hit and suddenly everything went online. Meetings by Zoom. Meetings by Teams. Suddenly people with disabilities were at the forefront as we all frantically scrambled to ensure that online learning platforms were accessible for them as much as possible. I was very proud to be part of a group of colleagues that set up a series of meetings with disability practitioners around Australia, and even New Zealand. In these meetings we discussed challenges and needs in regard to disability access. We supported each other and exchanged information. We promoted and practiced mindfulness so that all of us could cope with the numerous stresses and changes that had hit us all. I was particularly proud to have sent the initial email that started the initiative …. then all my colleagues came on board and together we coordinated a response. I have to say it was one of the most rewarding moments of my long career.

It’s been a busy year. I worked with colleagues from the University of Tasmania and Griffith University to put on a webinar about setting up accessible online learning for Deaf and hard of hearing students. From this we developed a Guide that captured these learnings so that they are not lost. This is now in the process of being distributed all over Australia.

I worked with colleagues from all over Australia to develop a survey and response to the DDA Education Standards Review. We also developed an online survey to identify issues and successes of online learning. This was targeted at students with a disability to ensure that they are heard. We were thrilled that nearly 700 students responded to that survey from all over Australia. We are now in the process of analysing the responses and developing a report to capture the learnings so that these learnings are not lost and everyone can benefit from them.

I presented at the Pathways conference at the end this year. I was part of a brilliant team that presented on issues around supporting people with a disability from Multicultural and refugee backgrounds in tertiary education. I have been working with colleagues and the NDIA to promote better use of NDIA plans to assist people wth a disability succeed in  tertiary education and employment. It has been a huge year.

In all of this we all adapted too going online. Zoom meetings, as hearing colleagues know, are exhausting. When you have five or six back to back you are just about ready to drop. Being deaf and having to take part in these online meetings, often with ten or more people from all over Australia, is no easy feat. It was all possible because my colleagues were supporting and adaptable. It was all about respect and working together. They restored my faith in myself and humans. They helped to heal me. I cannot thank them enough.

One of the downsides of 2020 was being separated from family and friends because of lockdowns and border closures. But you know what? It just makes you appreciate them all the more. It reminds you of the important things in life. Family, love, respect, kindness and friendship. If you have that, you do not need a lot else. I am reunited with family now and I have been able to catch up with many dear friends. Despite the hardships of the lockdowns and border closures it has only made me appreciate these things all the more.

2020 will not be a year we will not forget in a hurry. It has been the remaking of me. To my family, friends and colleagues allover Australia who helped me rediscover myself, I say thank you – You saved me!

Much love to you all and Merry Xmas!!

 

 

 

 

Dear Delegates and LACs.  …… 

You all have a very hard job. It’s an important job.  The lives and opportunities of people with a disability are very much in your hands. It is a role I once did. A role which I was very privileged to have done, both as a Senior LAC and also a Senior Planner. I sometimes made mistakes, we all do, but mostly I think I got it right. Do you know why? Because I did my homework. I based decisions on facts. What I didn’t know I researched. I made sure I had a good pool of information about specific disabilities so as to be able to ask the right questions. I was guided by the participant because the information that they provided was the essential key to developing a quality plan. (Yes reports and evidence were crucial but secondary to the information that the participant provided to me.)

That’s how it should be done.  One of the key principles of the NDIS is control. CHOICE AND CONTROL!!! Thats why I was always guided by the participant. But not just that, I would also assist participants to explore their needs. Using a simple problem solving approach taught to me in social work school, I assisted participants to look at their needs from every angle. In this way we sometimes identified needs that a participant had never thought of.

You know the key to being able to help participants in this way was to research. They other key was to use the resources available to me through the NDIS intranet. I used subject matter experts too. I would consult with them about assistive technology or some specific issues around a disability that I did not understand. One of the great things about the NDIS is that it has heaps of information like this.  Sometimes it can be difficult to find but the NDIS have developed some really good information. A good LAC or delegate will take the time to find it!

Now, I have been out of the NDIS sector for over a year. But not really. You see, weekly someone contacts me, mostly deaf people because someone has screwed up their plan. Some poor soul contacted me last week because a delegate and LAC had some how decided that a plan of $1000 was her lot. A person with a cochlear implant. A person with English language issues. A person that uses Auslan to communicate. $1000. Let that sink in.

Earlier in the year I had a 55 year old be told to do speech therapy because if she spoke better interaction would be better. She could get herself a tablet and use Voice recognition to help her communicate. $5000 or so she got. Bizarrely $1425 of that was for a plan manager. She isn’t the only one. I have had at least three come to me where plan management makes up 25% or more of the total budget they receive. Ridiculous.

Tonight, yet again, I had a Deaf person contact me because a delegate has decided that her so called poor English language skills are the responsibility the Education Department and have nothing to do with her deafness. Not disability specific they say.

I read the email that she received and let out a little scream. Why? Because I know within Melbourne NDIS, where this person is from, there are several delegates who are Deaf and subject matter experts who could have explained why English language difficulties are the result of deafness and are, in fact, disability specific. But the delegate couldn’t be bothered to consult these experts. The delegate had formed an opinion, an opinion based on total ignorance. An opinion developed simply because they could not be arsed to do their homework!! Please, just get another job if you cannot be arsed to do your job properly.

Now for the lesson!!

The earlier hearing loss occurs in a child’s life, the more serious the effects on the child’s development. Similarly, the earlier the problem is identified and intervention begun, the less serious the ultimate impact.

There are four major ways in which hearing loss affects children:

1. It causes delay in the development of receptive and expressive communication skills (speech and language).
2. The language deficit causes learning problems that result in reduced academic achievement.
3. Communication difficulties often lead to social isolation and poor self-concept.
4. It may have an impact on vocational choices.

https://www.readingrockets.org/article/effects-hearing-loss-development

This is just one article on the topic. Let me tell you – Many deaf children still have language deprivation that impacts on their life right through to adulthood. Many never achieve the level of literacy of their hearing peers. They struggle to understand written English, fill-in forms and deal with adult concepts. It impacts on their learning and can also severely impact on their ability to develop relationships, get qualifications, hold down a job and so on. Not all, but many. It’s a known fact – You just have to Google it, articles abound.

Now language for young children is developed through interaction with family and the environment. Chomsky had a theory of a Language Acquisition Device (LAD) in the human brain that assisted humans to develop language. The LAD is most responsive up until the age of five. After that it apparently becomes less responsive and language can be harder to acquire.

Language is conveyed through either speech or signs – Language is a mass of concepts that we learn through interaction. Concepts like love, hate, want, need, pain, give, take, care etc etc. We learn these concepts though interaction .. We express them through language — So speech and signs convey these learnings equally well for others to see or hear what we are thinking.

To learn language, particularly in a hearing world, you have to “overhear” You hear your parents talk, you hear you siblings talk, you hear the radio, the TV, the people on the bus, your friends at Kinder and so on. Like a sponge the young brain takes this in and develops language. Its not formal – Its just a natural process and young kids pick it up and develop language as we know it.

If you are deaf and in a hearing family you miss out a lot of that. Your communication needs an ideal environment. It needs no noise in the background, lips need to be seen and so on. For deaf kids overhearing is difficult. Deaf kids don’t hear something on TV and ask ” Mum, Dad – why doesn’t ScoMo like China?”  “Mum, Dad – Meg had a baby with Harry and they ran away from England- Why?”  Believe it or not, this interaction with the environment leads to learning of language concepts, vocabulary etc etc so that kids are ready for school –

For the deaf kid it can be an uphill struggle. Some do not get access to sign language and some come from broken homes. Some have families that don’t understand everything the deaf child is missing. So what happens is that deaf kids become isolated and have delayed language, limited  vocabulary and an extreme difficulties to interact with the people in their environment. This means that learning the written form of a spoken language that they have had little access to becomes extremely difficult. Many struggle and achieve only third grade literacy levels.

The below is an interesting little tidbit-

“Specifically, the report found that literacy scores in both oral and signing deaf children were lower than expected for their age. Scores were also lower in the signing group compared to the oral group, with 48% of the oral group and 82% of the signing children reading below age level, although signing children with two deaf parents scored at the same level as the oral deaf group. Scores for spelling were better in both oral and signing groups, but were still below average. In both groups, language skills were particularly weak.”   https://www.hearingreview.com/hearing-products/implants-bone-conduction/cochlear-implants/many-deaf-children-reading-difficulties-british-study-finds

The whole issue is infinitely more complex than I can cover here. There are many factors to consider such as age of onset, whether parents are hearing or deaf, access to appropriate technology, success of cochlear implants, social economic backgrounds and so on. But lets be clear, the acquisition of spoken language is hard for Deaf kids. Some are severely impacted so that they never gain high literacy levels. This impacts on every aspect of their life as adults.

Let’s also be clear that the literacy issue is not something that the Education Department is solely responsible for. It is not because the child failed – It’s because they are deaf and this prevented them obtaining literacy at the same level as their hearing peers. As adults they may struggle with forms, they may struggle with reading, they sometimes need help to understand written English, they sometimes need it broken down to more simple concepts or translated into Auslan … It is because they’re DEAF and they need support to deal with everyday interaction that involves complex English or spoken language concepts that are conveyed through  writing – IT IS ABSOLUTELY DISABILITY SPECIFIC AND AN NDIS RESPONSIBILITY. It is not something that is easily fixed and the responsibility of the so called MAINSTREAM!!

You cant always fix it by sending them back to school or literacy classes at TAFE. For some it is just not fixable – THEY NEED SUPPORT!

My plea to LACS and Delegates is this –

1. Understand the above and make decisions accordingly.
2. Stop telling Deaf participants that have literacy issues and that literacy issues are a mainstream responsibility – By doing so you make them feel like a failure.
3. ABOVE ALL – do your homework, use the subject matter experts and make decisions based on FACT and not your ill considered opinion that has been formulated from your own ignorance.

To the NDIA I say – Train your staff and LACs on these important issues – The decisions that they are making are beyond a joke!