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!