I worked in the NDIS as a Senior Local Area Coordinator and Senior Planner for almost four years. By and large I loved my time there. I loved meeting people with a disability and assisting them to develop the best possible plans that they could. People with a disability and their families were why I turned up every day. My colleagues, The LACs, were also a joy to work with. I loved mentoring them and assisting them to understand all things disability. The management, well I’ll say nothing because this is a positive post – But BOOOOO HISSS to many of them. That said, many of the management were brilliant too and bent over backwards to make things happen.

I believe in the NDIS. I think that when it gets it right, it’s brilliant. Sadly, outcomes upcan be very inconsistent. Skill and knowledge levels across the NDIS and LAC organisations are also extremely variable. This leads to many plans being a dogs breakfast. Even now, and I am not working in the field, I get contacted regularly by people with a disability for advice and assistance to develop or challenge their plans. I got myself a six pack from Bevo recently just to prepare him for his first NDIS meet. Call it a perk because I don’t get paid for it. Still, I get a great deal of satisfaction assisting these people as best I can.

Over the next couple of weeks I intend to share some stories of the good things that happen in the NDIS for participants with whom I worked. I was very privileged to have worked with them. I spent time in their homes sometimes They shared some of their most personal information with me. I was always struck by how humble they were. They always, without fail, met me half way with my communication needs. They often made me feel ten feet tall.

Today I want to talk about Kate. It is not her real name. Kate has a genetic condition that impacts on her muscle strength, coordination and cognitive abilities. She has a sister who has the same condition. She was my second ever NDIS participant. I rang her mother through the National Relay Service to set up an appointment. Mum suggested that we meet over Facebook Messenger so that we could type to each other without the need of a third person. I pointed out that this probably had some privacy issues around it. Mum didn’t care and that’s how we did the plan, through Facebook Messenger no less. (Mum’s choice mind you, so get back in your box all ye nae sayers.)

I absolutely loved the mum. She was cheeky and funny. She loved her daughters to death. We developed a plan for Kate that saw some support through a support worker so she could participate in swimming and other things. The rationale behind this was that having two children with a disability sometimes made it very hard for the parents to support them properly. This support was approved. Surprisingly, because NDIS are big on parental responsibility.

But you know what? Mum never used it. She said she felt awful at the thought of not being there for her daughter. She said it was her job and she didn’t want anyone else doing it. At review time she removed all external support for community participation and focused fully on capacity building. Speech, physiotherapy, occupational therapy and that sort of stuff. This is common. So many family members refuse support from an outside provider, simply because they see it as their role. No amount of persuasive argument about the need for a break sometimes could change their mind. I was always humbled by this attitude. That’s why I get so angry when people say that there is too much of a sense of entitlement in Australia today. It just isn’t the case most of the time.

But the big thing for Kate was a bike. Her family loved bike riding. she wanted to ride with them. She wanted a specially adapted bike so that she could pedal a bike despite her low muscle strength. I made a few enquiries and found a company that designed bikes just for that. To me this is what the NDIS is all about.  People in the NDIS love to wax lyrical about  “An Ordinary Life” – (No vomiting please!) What is more ordinary than a child riding a bike.

I discussed this with the NDIS. The person I discussed it with said NO! Bikes, they said, were parental responsibility. I argued that this was certainly the case but that most people didn’t have to pay $2 500 for their kid’s bike. I argued that it was surely the NDIS role to assist to pay for this extra cost to modify a bike. The NDIS person was having none of it.

As I do, I completely ignored the NDIS advice and put it in the plan. It was approved, subject to assessment and quote. This is where the long journey to get Kate a bike began. The assessment and quote were dutifully completed and submitted. But the NDIS refused to approve it. They said it was parental responsibility. A complete Cockwomble of a decision.

By the time of Kate’s first scheduled review I was no longer her LAC. Being a Senior LAC meant that the new LACs that were recruited took over some of my caseload. I remember just before Kate went to her new LAC her mum came in to the office to give me cake and Tim Tams. Kate was a really great kid. I was really sad that I hadn’t been able to get the bike over the line. I encouraged Kate’s mum to keep trying and put it in her new plan.

The second plan came and went and still the bike was not approved. There are people within the NDIS who are, frankly, heartless. They have no idea of the principles of the NDIS or of how the NDIS can facilitate community and family participation simply by approving simple things like a modified bike. It is absolutely the NDIS responsibility to fund these sorts of modifications. But no, they were adamant, it was parental responsibility.

So entering into the third plan mum decided she needed a more personable LAC and requested that I do the review. Of course, I was more than happy to do that. The previous LAC had done nothing wrong. She developed a great plan, added the bike again but it was refused.

I was determined to get that bike. Mum was happy to keep trying. She was just grateful for the therapy hours that she was getting. But that bike, I wasn’t giving up and neither was mum. I looked at the notes. And you know what? – The NDIS were saying that the bike was refused because it was parental responsibility AND that it had no therapeutic value to Kate. I was flabbergasted. Apart from confidence, fitness, coordination and muscle strength – no therapeutic value. How short-sighted could they be?

I set about getting therapist reports to show how bike riding was going to benefit Kate in so many ways. Build confidence, help with participation, build muscle strength etc. I told mum to get the physiotherapist to write a report outlining how the bike was going to help with coordination and maintain Kate’s muscle strength. My LAC colleagues insisted that it was not going to happen. They said the NDIS would not approve it. But they did. YES they did. You should have seen my fist pump when they did.

Kate and her mum had to jump through hoops and it only took three years to do it, but it happened! Shortly after the approval I started a six month stint with the NDIA as a Senior Planner. One day, on Christmas Eve no less, I received an email from Kate’s mum. Attached to the email was a photo of a proud Kate sitting on her bike. The smile on her face was priceless.

A little tear of joy escaped the corner of my eye, as it does now as I write this. Just a small thing that the NDIS can do to make a difference. An adapted bike. It is my favourite memory of my time in the NDIS. These are the things that I miss, just making that little difference in a persons life!

I have been in the disability sector for over 30 years. As a deaf professional I have pretty much seen it all. I have been lucky, most of my managers have been great. But, there is always someone, somewhere who screws things up. There are people that simply should not be anywhere near disability, or any group with a disadvantage for that matter. Yet, somehow they make it all the way to the very top. These are the Ogres of the Disability Sector.

I once was refused interpreters by an organisation that catered for disability.  They were doing a training course on counselling children with language issues. Counselling by play they called it. So I asked for interpreters and the boss of the training company told me that they would not provide. It was not financially viable they said. They offered me a free registration if I could arrange my own interpreting. I pointed out that the registration fee was actually more than what it would cost to pay for the interpreters. They still refused. Said the boss, ” Come on Gary. if people in wheelchairs bring their own wheelchair, surely you can bring your own interpreter?”  Yes, that happened. The old joke of burying their interpreter with the Deaf person when they die rings true.

I got a six month contract as a Senior Planner with the NDIA. I was approached by Hays Recruitment to ask if I would be interested. I was interviewed and won the contractor job on merit. I started work with the NDIA and did the mandatory training. To their credit, the NDIA arranged interpreting for this. After four weeks I commenced my job proper. Suddenly the NDIA would not provide interpreting. They argued that it was the job of Hays to pay for this because, technically, contractors are employed by them. Hays didn’t want to pay for the interpreters either. I even applied for interpreting via JobAccess and asked the NDIA to confirm my employment. They told me to get Hays to do it. This went on for eight weeks or so. In that time I, a Senior Planner, was sat at my desk waiting for the management of Hays and the NDIA to sign the form so that I could get interpreters or captioning to do the job.

Neither of them would sign it. So I couldn’t meet with clients. I was sat at my desk for eight weeks doing virtually nothing. I completed every item of the NDIA online training. I am sure I am still the only person in the world to have done so. Eventually the manager approached me and asked me to vet a few plans to make sure they met requirements. ” I have every confidence that you can do this, Gary”, said the manager. Well, I would bloody hope so given that I was a Senior Planner. I was livid and as the manager walked away I signed something non to complimentary to her back.

Eventually the NDIA offered me an 18 month contract so that I became their employee. To be fair, from then on they provided for all my needs. But still the episode left a foul taste in my mouth. How could management let this happen? How could the NDIA put me in the middle of toing and froing over the issue of access?  IT’S THE NDIA, surely disability should be a priority? But it wasn’t. I do not care who was responsible, management dealing with the biggest disability program in Australia needed to do better than this.

I also worked for a local council. My responsibility was access and inclusion. I had a heavy focus on making things like grant proposals requiring applicants to outline their disability access plan. I was determined to ensure the council emergency response considered disability needs. The latter included things like ensuring town hall type meetings were held in accessible buildings, that interpreters be provided, plain English versions developed, videos captioned and so on. I was really powerless and had to convince respective directors and managers to make these changes.

And you know they would promise the Earth and not deliver. Now, being deaf I don’t use the phone, I communicate by email or text. On a regular basis I would remind these people of their commitments and ask for action.

Do you know what happened? Not only did they not do as promised they refused to reply to emails. I brought this up with my manager. I said that they had stopped communicating and that they would not follow through with their commitments. They were basically giving the middle finger to disability access. I will never forget being told by the emergency services manager that disability was not their remit and that the neighbours were responsible to help and ensure their neighbours with a disability were supported. No, I do not jest, nor do I exaggerate.

My managers response to this was to tell me that when I had a meeting and an Auslan interpreter was present I should go around the building with the interpreter after the meeting and try and grab the offenders. I pointed out that this was not feasible because after meetings interpreters had other jobs to go to. She said she would write an article in the employee’s newsletter to let staff know I was deaf and make them aware of my needs. I got quite angry. I said, “NO! these people have to adjust too. They have to meet me half way. Not following through on promises and not responding to emails is simply unprofessional.” 

Naturally, nothing happened. Nothing changed. It was, of course, my fault. My manager tried to blame me. I asked what I was supposed to do if these offending people had simply stopped communicating and following through on their commitments. She basically accused me of exaggerating and lying. That was until forwarded her no fewer than 67 unanswered emails, just concerning ONE manager! It was a tough time and it made me quite ill.

Oh, and there was the lovely manager who asked me to go back to my desk and, “do more important things”, because they didn’t want to adjust their communication style. I was cramping their style you see. And then when I was challenging them on important staff issues they tugged their ear lobe and told me to listen. I probably didn’t help myself by telling them that I had listened to them for the last hour and a half and now it was their turn to listen to me. It should really come as no surprise that this same manager made a person with a physical disability move because they considered them an occupational health and safety risk. They might fall on someone you see. A real Ogre that one.

Before writing this I asked colleagues with a disability to share with me their own experiences. There were some shockers;

• The deaf man told to get a mental health plan for reporting someone who secretly recorded a meeting with staff. Instead of acting on this appallingly unethical behaviour of the said staff member they turned it back on him, implied that he was the problem and that he should fix himself up through a psychologist.
•  In the 90’s, the deaf person working for a deaf organisation who was questioned by the CEO about their need for interpreters because they had indicated in their interview that they were a good lipreader and mostly coped by lipreading.
• The deaf professional told by her manager, who could barley finger spell, that her signing skills were not up to scratch. (This was very recent.)
• The Deaf professional told to leave a planning session because the meeting would be fast paced and she would hold them up and not be able to follow.
• The manager who asked a clinical staff member to look up some mental health information on a student, with out permission or consent. This was reported to HR who refused to act.
• The manager who chased an in pain staff member to her car with an implied threat. Apparently, associating with certain people on social media would be bad for their prospects.

These anecdotes are but a fraction of what people have sent to me. A large percentage of them happened very recently and all were targeted at people with a disability.

I have long stated that people who work in the disability sector need to have experience in disability. They need to be culturally sensitive to the needs of people with a disability. Most importantly they need to demonstrate that they have the right attitude and knowledge. I have pushed this view often in the disability sector only to be told that disability can be taught and can be learnt on the job.

This is why we see within the NDIA an assortment of heavy handed bureaucrats. We see within LAC positions people who were previously policemen and even bank clerks and who get the job because they have people or IT skills. Bugger the fact that they have minimal knowledge of disability.  This is why many NDIS plans end up being a dogs breakfast. Too many people simply do not know what they are doing!

Yup there are Ogres working in management in the disability sector and they are doing enormous damage. Usually it is people with a disability who are targeted unfairly. There are simply not enough people with a disability in management roles and far too many ableist managers who do not know what they are doing. It is widespread and causing immense damage.

It is not just indirect discrimination, it is often outright abuse. Like the elephant in the room, the Ogres in the disability sector need to be addressed!