Deviants and the Devalued – Why SRV has no place in the NDIS.

I outed Social Role Valorisation last week. I suggested that Social Role Valorisation and Normalisation had no place in any program or policy based on human rights. I suggested the NDIS was about choice and control and making a program about having choices that only the mainstream will value and accept is not person centred. I suggested that decision making based on having people with a disability conform with the norm and have a valued role that others will admire has no place in a program based on human rights.

For my efforts last week I was patronised by some people. They claimed that I didn’t know what Social Role Valorisation was. I didn’t understand its value and influence on policy direction and program development. Horrifyingly there are actually people that think Social Role Valorisation and Normalisation still has a place in today’s world. I shudder that there are still people in high up areas that think it does.

The history of Social Role Valorisation lies in Normalisation. The concept of Normalisation supposedly has its roots in the 60s and 70s in Scandinavia. Let me offer you some quotes from academic papers that explain what normalisation is. Initially normalisation  “…was first applied only to mentally retarded people. Its 1969 formulation by the Swede Bengt Nirje called for “making available to the mentally retarded patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society.”

Clearly the scope of normalisation was to make “The Retarded” (Yes I know) as much like people in mainstream society as possible. Now the noble premise of Normalisation was that people who had disabilities and were supported and educated in institutions did not lead happy lives. The noble aim was that people with a disability should be part of mainstream society because institutions were, “..congregating together large numbers of people with all sorts of maladaptive behaviors; located in bleak settings far from their families or any population clusters, with barren buildings and virtually no meaningful or productive occupation for their residents. The people who lived in them ended up virtually cut off from ordinary society, and often died there in obscurity.”

I won’t dispute that. That still happens today. But not just in institutions but in society generally. That’s why we have a Royal Commission intro Neglect and Abuse of People with a Disability. Sadly it happens everywhere. As you can see from todays headlines that are alleging deaths because of NDIS ineptitude, bureaucratic negligence also leads to death of people with a disability.

But back to Normalisation. Apparently academic Wolf Wolfensberger got a whiff of what was happening in Scandinavia. He decided to go see for himself. The idea of Normalisation appealed to him.  He took the Scandinavian model and applied it to any group of people he deemed as “deviant” or “devalued”.  Yes, these are the words he used. His framework for policy and program development promoted the, “Utilization of means which are as culturally normative as possible, in order to establish and/or maintain personal behaviors and characteristics which are as culturally normative as possible.”

Now you can package this anyway you want but clearly old Wolfy felt that the key to assisting “deviants” and the “devalued” was to make them, in his words, as ” .. culturally normative as possible.” Integrate or assimilate are other words that come to mind. Make them normal, like the norm, like the mainstream. Take your pick.

Wolfsenberger’s introduction to Normalisation led to him developing his theory of Social Role Valorisation. (SRV) His theory of SRV applied to any group of people that might be seen as “deviant” or “devalued”. In Australia that could be disability, Aboriginal and Torres Strait Islanders, the unemployed, refugees, people with mental health issues – Take your pick. Say this with me, and say it loud – “Deviants” and “Devalued” need to be as “Culturally normative as possible.”

Ok, now there are people that say SRV is not Normalisation. Rather it expanded and developed Normalisation to apply to a wider group of “deviants” and “devalued” So SRV is, ” …the notion that the good things any society has to offer are more easily accessible to people who have valued social roles. Conversely, people who have devalued social roles, or very few or marginally valued ones, have a much harder time obtaining the good things of life available to those with valued social status. Therefore valued social roles and the positive status that typically attends them are a key to obtaining the benefits inherent in any given culture.”

I could be wrong but this reads suspiciously like Normalisation dressed up to sound a bit more clever. Yes, I know the reader has already gathered what I think of Normalisation and SRV. I think it’s horrible. It’s patronising and it’s condescending. Worse, I think it promotes an ideal that there are elements of society and people that are better than other elements simply because they’re “normative”

People will have you believe that Normalisation and SRV are fairly recent ideas. I am here to tell you that they are not. I am going to tell you a story of the neglect and abuse of people who are deaf that has its origins back in the 19th century. You will see at the end of this story, hopefully, that Normalisation and SRV should be confined to the scrapheap. More importantly, I hope you will see that they have no place in guiding policy of the NDIS.

Did you know that Alexander Graham Bell was one of the first practitioners of Normalisation? Did you know that he actually invented the telephone while trying to invent a machine so that his deaf wife could talk properly? He actually invented a machine that could turn a dogs bark into words. He also wanted no deaf people in the world and wanted laws that would prevent deaf people ever marrying. Deafness was “deviant” you see. Breeding little deaf babies …. Please no!   “…Bell feared “contamination” of the human race by the propagation of deaf people even though most deaf people statistically are born to hearing.”

Deafness, you see, is abnormal. It is not a cultural norm. Not to be encouraged. Said the grand old Bell, “Those who believe as I do, that the production of a defective race of human beings would be a great calamity to the world, will examine carefully the causes that will lead to the intermarriage of the deaf with the object of applying a remedy.”

Now if by some chance deaf people should come into the world, a tragedy that it may be, they had to be Normalised. They must not use sign language. For that would stop them speaking. They needed to speak. Because that was what most of us do and is culturally normative. SPEAK and you shally succeed. Indeed this is what he said of sign language … “ … essentially a foreign language” in an English speaking country like the United States, the English language, and the English language alone, should be used as the means of communication and instruction at least in schools supported at public expense.” Now go back and read the definitions of SRV and Normalisation – Does it ring any bells?  ( No pun intended)

This was the mid to late 1800’s. At this time, from what I understand, sign language was prevalent. It was used in education. There were deaf schools. Deaf people did all sorts of jobs. They were lawyers, teachers doctors and the like. They were just part of the landscape. Bell and his advocates for Normalising deaf people destroyed that. The famous 1880 Milan conference on Deaf education decided to ban sign language and use only oral methods. Normalisation was the policy directive and advocates of sign language at the conference were ignored. Our friend Bell was prominent at this conference. In fact – ” ..Bell spoke for three days while advocates of American Sign Language were only given three hours to argue against oralism.” 

What this began was a horrific set of programs that attempted to make people who are deaf as much like hearing people as possible. It was speech at all costs. Speech was valued. English was valued. Those Deaf that spoke well, wrote well – just like hearing people – were more likely to get access to all the good things that hearing people do – ( Yes I did just paraphrase SRV principles.)  But what really happened?

Language deprivation happened, that’s what. And by the thousand, nae the millions, deaf education systems the world over churned out deaf kids that were language deprived. Advocates of oralism would wheel out their success stories. What they would not tell you is that these “success stories” likely had a fair bit of hearing that assisted them to learn to speak. The ones who oralism failed, they were left hidden away. This meant for nearly a hundred years many deaf kids were deprived of language and opportunities.

Yet even though the evidence mounted that oralism was failing many, they persisted. They punished children that signed. They caned them. They made them sit on their hands. And what they achieved was a generation of language deprived and largely illiterate deaf people.

Deaf people the world over protested. They let people know how isolated they were. They let people know that this dominant hearing people ideal was messing up deaf people. The evidence was there for all to see . Low attainment. Poor literacy. High incidence of mental health issues. But the dominant hearing group needed to fix these “deviants”. Instead they ruined a large proportion of them.

In Britain they had this to say in the 1970’s – “…They also felt the oral approach led to the assumption that deaf pupils would integrate easily with the dominant hearing population on leaving school which was misleading and a source of concern for many parents. They were also disappointed at how little attention had been paid to the evidence of deaf people themselves and their feelings about the ‘severe limitations of their oral upbringing’. (British Deaf and Dumb Association (1970) Report by a Working Party of the British Deaf and Dumb Association formed to study and comment on ‘The Lewis Report’; The Education of Deaf Children: the Possible Place of Finger Spelling and Signing. ”

The deviants, the deaf people, needed to be assimilated with the dominant. Only in this way could they be properly valued. See the theme. It’s almost Normalisation and SRV to a tee. Its been around since forever. It has caused great damage since, well forever.

Look, I get that institutions were and can be a bad thing. I get that in the past there was an out of mind out of sight approach. I get that institutions were bad, poorly run and centres of abuse. But I also know that mainstreaming, that wonderful tool to implement SRV and normalisation, failed many. Far too many.

Why? because the support was not adequate. Why? because for many just being there in a school like everyone else was the ideal. It didn’t matter if Johnny and Jenny sat on their own in the playground. It didn’t matter If Johnny and Jenny sat in a classroom and generally understood nothing.

It didn’t matter that if in adulthood adult 24 year old Jill went for walks with a senior citizens group, was given lollies and no-one ever spoke to her. Goodness Jill was with the mainstream, isn’t that a valuable thing? It didn’t matter if evidence showed that educational attainment in mainstream settings was low. This was ignored because being in the mainstream – was valued by society. Just being there meant they were more valued by society.

Crap. Just like with those old time institutions they were largely out of mind and out of sight. Support was inadequate and arguably worse than in specialist settings. Social interaction for many did not exist and the damage the isolation in this “Normal” setting caused has never really been measured.

And you know what? The Deaf people, so badly treated in the name of Normalisation and SRV based policy, later discovered the Deaf community. Some of them began to learn to sign. They made friends who were Deaf. But for many the language deprivation that they experienced at the hands of oralism was permanent. While the ability to sign improved their interaction they still had the literacy of a grade three child. They still couldn’t fill in forms. They still couldn’t compete for work with others. If they did work it was generally manual labour. Not all of them but thousands upon thousands.

And the cheek of the hearing populace was to use these people who were introduced to signing much later in their life as an example of why using sign language with deaf kids was bad. Yup, that’s what they did.

So to all you people reading this who think I don’t get SRV and Normalisation, let me tell you that I do. I get it in a way you will never fully understand. And get this. It’s not new. It’s been around since forever. All Wofsenberger did was make it seem clever. It isn’t. It’s just a pompous idea that tries to fit everyone into one basket. It needs to be confined to the annals of history.

All that I ask is that society just start to value people for who they are. Value their choices and support them accordingly. Sure, if the choices are damaging to others there is a limit. But let’s create a system of support that values people for who they are and not promote an idea that they will be more valued if they conform with the majority values of others.

Deviants and devalued – That says it all. It has no place directing NDIS policy.

The NDIS Heroes, or Are They?

I worked in the NDIS environment for over three years. I was a hero. I was told so all the time. Not by participants but by the bosses above me. You see the motivation for us was that we were helping Australians with a disability live “ordinary lives”. We were helping Australian’s with a disability to be part of our society. We were making them happy. We were making them more whole. For our work, either as a LAC or a planner empowered Australians with a disability. WE WERE IT, without us Australians with a disability would be NOTHING.

Ok! I am exaggerating a little bit. Just a little bit though. But I am not kidding when I tell you that one of the key catch phrases was empowering Australians with a disability to live ordinary lives. Empowered and ordinary lives were mentioned often. I mean, for fucks sake, a group of us actually had to sit through a week long training session that centred around Social Role Valorisation, aka normalisation. And it was endorsed by and funded by the NDIA. I didn’t make myself too popular by suggesting that the way we could prevent Johnny with spina bifida getting his feet sunburnt was to either buy him sunscreen or buy him some kneecaps (Get it?) It was an actual case study, I kid you not. My attitude and flippancy was part of my disgust at having to sit through such drivel and insulting training.

Now let me say this now. Any person working in the disability sector who thinks their role is primarily to empower people with a disability has got it wrong. Any person that thinks the NDIS is responsible for assisting people with a disability to live “an ordinary life” doesn’t get disability, or even life for that matter. Any person that still follows or endorses Social Role Valorisation (SRV), please stop.

Let’s remind people what the basic idea of SRV is. The root of SRV suggests that, ” ….good things any society has to offer are more easily accessible to people who have valued social roles. Conversely, people who have devalued social roles, or very few or marginally valued ones, have a much harder time obtaining the good things of life available to those with valued social status.” Let it also sink in that I have copy and pasted this from the International Social Role Valorisation Association website.

Consider this concept of Ordinary Lives – What it basically means is that a person who does the things in life that we consider “ordinary” is more whole and more valued. So if a person works, that’s good, they are more valued. If they earn a good wage, they are more valued. If they do things considered ordinary like catching a bus, socialising with people, partaking in activities they are more valued. The normalised person is more valued.

Now let’s consider empowering someone to live an “ordinary life”  This is what we were often told was our role in NDIA land. This was one of the key motivational catch phrases in the NDIA. The basic principle of our job was to make sure that Australians with a disability are as NORMALas possible. Because the concept of ordinary in this case is NORMAL.

Empower means to give power to.  It means that I as the NDIS person have power to ensure Australians with disability can be NORMAL as per the idea of Social Role Valorisation. I am like a light switch, I turn that power on or off at will. This is my problem with the word empower in a human services framework, mainly that it assumes that the power is mine to give. It is not. I will come back to this.

Firstly let us consider what society considers ordinary, particularly through SRV eyes. It implies that a person with a disability will only ever be valued if they are doing the things in life that others value. So if you walk, you are more valued. If you hear you are more valued. If you see you are more valued. If you work you are more valued. If you pay tax you are more valued. You get the gist? And simply by striving to make people with a disability as ordinary as possible we devalue their very existence. It is a truism that many in society consider that without these NORMAL things people are lesser beings.

Now I know people that promote SRV don’t necessarily feel this way BUT when you promote a concept of normalisation that is what happens. That is why people cry tears of joy when little Sally walks for the first time but get sad when she chooses later to use a wheelchair because its less painful and easier. That is why its wonderful that Peter can hear something with his cochlear implant but tragic when he decides he preferred not hearing at all to the sound that the Cochlear implant provided him.

That is why people with a disability who find it hard to gain or be employed, through no fault of their own, are considered burdens. The very concept of “ordinary” as promoted through SRV and many within the NDIS devalues disability in any shape of form because it considers the state and life of a person with a disability as not normal. And this is why SRV and the concept of “ordinary lives” revolts me so.

I would love the NDIS and all human services to stop using the term empower. Power is not any ones to give. Everybody has power. The problem is that our society often takes it away through poor design and condescending attitudes. Aboriginal and Torres Strait Islander people are a prime example. The whites, the normal ones, consider Aboriginal and Torres Strait Islanders as not normal and troublesome. We think it’s our role to fix them and control them so that they don’t harm themselves. So we give them welfare cards so that they can’t buy alcohol. We are better you see, much better than them. Or so we seem to think.

But we think we are empowering them. We think we are empowering them to take control of substance abuse and social issues in their communities. They can’t do it themselves so we will do it for them. It is for their own good you see. We the heroes!

People will hate me saying this, but a similar attitude exists within the NDIS. Thats why they use terms like reasonable and necessary. Thats why a key platform of the NDIS is value for money. That’s why the NDIS has a a Typical Support Package and one must justify with oodles and oodles of evidence if ones needs should be above the Typical Support Package. Thats why they have a standard price of around $ 8500 for a manual wheelchair. If the price is over that then the person with a disability must jump through hoops to prove the need. For people with a disability there is no dignity, there is no power

That’s why the NDIS will only provide standard hearing aids and hardly ever approve hearing aids above that standard. Thats why they have patronising ideas such as parental responsibility and take it upon themselves to decide what these responsibilities are rather than provide appropriate support. That’s why they deny Auslan to families because they have speech therapy and they consider that is enough. They dictate and control.

Yes, the power is entirely with the NDIS. They can chose to provide it or take it away as they see fit. They can switch it on and off like a light switch. All in the name of sustainability of the scheme. That’s what EMPOWERING in the land of the NDIS is about. It is deciding what someone can and should have. When they say YES they have empowered those lovely people with a disability, What saints they are. When they say no, they have empowered them too because they have ensured the sustainability off the scheme for generations to come.  (Read this with dripping sarcasm.)

This is everything that is wrong with the NDIS. I am here to tell you that if you are working for the NDIS you have been EMPOWERED by people with a disability not the other way around. That car you are driving, that house you are paying for, that holiday you are having or that fine wine you are drinking tonight is because of people with a disability. Without them where would you be?

I am here to tell you that it is obscene that the CEO of the NDIS is earning$700 000 a year while the NDIS quibbles over the cost of a hearing aid or wheelchair. I am here to tell you that the Chair of the NDIS Advisory Board earns more in one year than many people with a disability get in their plans over five years.

I’m here to tell you that that support coordinators, that technology providers, that support workers, that wheelchair mechanics or that plan managers have a business because people with a disability exist. I am here to tell you that thousands of people that have a job and an income do so because of people with a disability. I am here to tell you that they are the SERVANTS of people with a disability. They do the bidding of people with a disability, not the other way around.

I am here to tell you that the NDIS was set up based on human rights. Human rights that people with a disability already have.  BUT because of non disabled and their neglect these human rights have been denied.  I am here to tell you that the NDIS is an investment model based on investing so that people with a disability are able to participate in the community as they see fit. Through that participation they are creating business and dollars that ultimately will pay for the NDIS and some.

It is not the job of people that work in the NDIS or the job of people that support people with a disability through NDIS money to tell people with a disability what life is ordinary. It is not the job of the servants within the NDIS framework (the LACS, delegates, team leaders, support workers service providers etc .. ) to tell people with a disability just what rights they have and decide what is appropriate for them. Your job is to serve, to listen and ultimately do what is needed for people with a disability to achieve their goals and partake in society in whatever way they wish. That is their right, just as it is the right of every other human being,

In short the power imbalance is wrong. The real bosses of the NDIS are people with a disability. Everyone that earns money and makes a living through the NDIS does so at the the will of people with a disability. Remember that and remember where the real power lies. Then just maybe, just maybe the NDIS will achieve what it was established for!

You aint no heroes. You are there to serve.

 

 

Neglect and Ignorance.

Sco Mo was on TV today. Australia is burning so he tried to lead. Fires happen apparently. Lightening, arson, random sparks and the like. It’s unfortunate said Sco Mo.  Meanwhile the crickets on. Let’s not forget the brave cricketers entertaining us and distracting us while the country burns. I am not really sure how much of this is actually right. You see Sco Mo spoke with no captions or Auslan interpreters. That’s what I heard anyway. I saw a bit of it on Facebook, no captions nor interpreters. My friend Kelly gave me the gist of what he said. I wish she hadn’t. There can be very few leaders in the world as ignorant and lacking in empathy as our Sco Mo.

It reminded me again how far Australia has to go in terms of disability access. A friend contacted me today and asked me if I would be making a submission to The Royal Commission into the Abuse and Neglect of People with a Disability. I pointed out that I had not really been abused. He reckoned that the neglect that we people with a disability experience on a daily bases, at the hands of ignorant able bods, was akin to abuse and that the Commission should hear about it. I am not sure if that is their remit but he had a point.

I mean a few years ago I was working in a job with a local council. In the Council they have an emergency services manager. This person’s job is to respond to natural disasters like bushfires and get the community prepared and ready. They do this in many ways. Through town hall meetings, radio announcements, videos, letterbox drops and the like. They develop a response plan to disasters. I looked over the plan and pointed out that there was no mention or consideration of people with a disability.

There was no plain English information for those with learning disabilities. No large print information for those with a vision loss. No captioning on videos. No consideration for making town hall meetings accessible through interpreting, captioning or physical access. No thought, whatsoever, had been given. Over two years I tried to get the Council to consider these things.

The Emergency Services Manager at first promised the earth but did nothing. My persistence was met with contempt. She stopped responding to my emails altogether. I would talk to her and she would patronise me and smile. She once said … ” Gary, we have a community, they will look after the disabled members.” While I agree, there is a role for the community, there is so much that needs to happen to ensure people with a disability are informed and safe. The ignorance and complete contempt for the needs of people with a disability was scandalous.

Luckily there were and have been no major disasters in the area in this time. I truly fear for the safety of people with a disability because there is no plan to respond to their needs. No plan for accessible evacuation vehicles, no plan to communicate with deaf members, no audit nor knowledge of where people with a disability might be. You see, the neighbours will save them.

Is this abuse and neglect of people with a disability? Is this something that the Royal Commission should hear about? Must someone die first until people realise the magnitude of what needs to be done to respond to the needs of people with a disability in the case of an emergency? My friend has a point. Disregard and ignorance of the needs of people with a disability is neglect.

Until recently I was a member of the Disability Workers Registration Board in Victoria. I got a job in Adelaide and had to resign, sadly. This Board was looking at standards required to employ people in the disability sector. A disabled member of the Board raised an issue of attitude.

He said qualifications are one thing, but how do we measure attitude. How can we ensure that people who work with people with a disability understand human rights, dignity, equity issues, power imbalances and the like. He pointed out that he would much rather have someone working for him that met an attitude scale rather than just a focus on qualifications and meeting police checks. He was right. I hope the Board take his concerns seriously.

I mean its 2020. Just last year someone I worked with in the NDIA gave me some work. She didn’t quite pat me on the head but she said… ” I have every faith that you can complete this work.” For fuck sake, it was just checking NDIS plans. 30 years experience and a title of Senior Planner and I get patronised like that.

Then I was in a meeting with my manager who was frustrated with communication issues and having to ensure I could lipread her. “Gary ..” she said, ” Perhaps you have more important work at your desk. Would you like to go and do that.” I must have given her an almighty dirty stare because she almost physically jumped back. ” No thank you.. ” I said, “This work is very important too.”

She later apologised but the number of gaffs she made was appalling. For example she tugged her earlobe and  said .. ” Gary, listen to me.. ” She once had the gall to tell me to stop taking notes and focus on the Auslan interpreters. This is a person in a high ranking leadership position working with people with a disability. What did the employer do to measure her attitude and approach to working with people with a disability?

Not a lot it would seem. And this is what the Board member was touching on. To work with people with a disability takes more than just a piece of paper. What can we do to ensure  people who are working with people with a disability are not just academically qualified, not just accountants but actually know how to relate to people with a disability and treat them with respect.

It is a big hole in the sector, the elephant in the room. No one wants to address it because it is too hard. Meanwhile, people with disabilities are still labeled occupational health and safety risks. Meanwhile, organisations are neglecting their responsibilities and expecting “The Neighbour’s”  to pick up the slack.

Australia has improved in terms of disability rights but there is still much to be done. Neglect of people with a disability happens in so many forms. People in leadership roles are chosen for the wrong reasons and this leads to poor decisions, ignorance, neglect and indirect abuse.

We all know that the abuse that people with a disability have endured, both physical and sexual, is horrendous. I fear that unless we make a real effort to address the attitude and power imbalances we will only ever paper over the cracks, no matter how many millions of dollars are spent on the Royal Commission.

Here is to a better and safer world for all people with a disability. The current one in Australia is nothing to be proud of and leaves a lot to be desired.

 

 

 

T’was The Night Before Xmas — The Scrooge of Xmas Award!

T’was the night before Xmas

And my true love said to me

Come to Carols

Or I will divorce thee.

And so it began. My first trip to Vision Australia’s Carols By Candlelight since 1996. That was the year I met my wife to be. That year she was showing me the best of what Melbourne had to offer. Truth be known it was 34 degrees or something that night. I was sweaty and sticky. There was also no access through Auslan interpreters or captioning. It was a pretty awful night to be fair. I vowed never to go again. Although, ever since, my wife has forced me and the three lads to watch it on the telly virtually every year. From the comfort of my living room, with the air conditioner on and with captions, it is bearable.

But this year 2019. My wife and I have begun the modern trend known as, Living Together Apart. I have accepted a job in Adelaide and we agreed that opportunities for work are few and far between. As we have a house in Adelaide, and always planned to live there eventually, we both agreed it was prudent to accept it. My kids are older now and very independent. So my job is to get the home established in Adelaide so its ready for the Missus to move in when she tires of the hustle and bustle of Melbourne.

So I had been away for a couple of weeks. I was back in Car City to spend Xmas with the family. Naturally Carols was a nice way to spend Christmas Eve. Even so I sort of excitedly / reluctantly accepted. Finlay, the middle child nudging 21, joined us too. He thought Mum was going alone so put his hand up to take the bullet and attend with her. Little did he know that I was going too. BAHAHAHAHAHAHAHA

So anyway, we arrived early hoping for a good seat. There were hugs all round with Deafies and interpreters. Carols isn’t something you attend for the luxury. You sit on the grass, get bitten by ants. If you are a little allergic to grass you itch a lot. If you are 55 with arthritis, like me, getting up and down hurts. I fell over once trying to get up and nearly flattened some poor Deaf guy.  But no matter I survived

The Auslan interpreters had been placed in a kind of cement court yard with a massive pylon in it. The problem was that the pylon obscured everything. You could see the interpreters but not the stage. What you could see of the stage wasn’t worth seeing. No matter, I thought, I’ll watch the big screen. Unfortunately the big screen was behind me. If I watched that I couldn’t see the interpreters. It was unfortunate but I comforted myself with the knowledge I had saved my marriage and I was among good company.

So for three hours I actually had fun. I had some laughs, I avoided killing the bloke when I fell over. My wife fell over too. I laughed a little too hard, but hey she teased me mercilessly when I fell down.

So wife, son and I walked back to the tram stop. I mentioned to my wife that perhaps we needed to educate Vision Australia about placement of interpreters and the like. After all, I reasoned, we are paying good money to attend ($77 a ticket) We should get at least good quality vision of the stage for that. And then she told me. Apparently Vision Australia had refused to provide any Auslan Interpreters and three Deaf people combined their NDIS funds so that they could get access.

I was livid. You see on their Facebook page for Carols by Candlelight, Vision Australia had claimed the interpreters as their own. You don’t believe me?  Look at this ..

 

Image description … Screenshot of Vision Australia Facebook page that is advertising Auslan Interpreter access as their own initiative.

 

Yes indeed! After three Deaf people had pooled their NDIS funds, while at the same time encouraging other deaf people to attend so that others could benefit from some access, Vision Australia had the audacity to make it seem like THEY were responsible for the access. I was and am appalled.

This is an organisation that raises around $26 million a year through fundraising. A lot of that comes from Carols By Candlelight. The shit view that I got cost $77. They then flog candles to you at $5 a pop. I’m sure the food stalls pay a premium to set up there too. AND the performers, the brilliant performers, give their time free. Not to mention Channel Nine who probably pay a fair price to televise because Carols is always a top rating event. Truth be known, even though they tried to make it look otherwise, Vision Australia paid not one cent towards the interpreting costs. NOT ONE!

And where was the access for hard of hearing. No captions on the screen. Where was the access for Deafblind. This huge and wealthy organisation could not be arsed to provide proper access to these groups. This huge organisation that makes a pretty penny from the NDIS as well, would not provide Auslan interpreters. This meant three big hearted Deaf people combined their limited NDIS funds to provide access for as many Deaf people as they could. Words can not do justice to how I feel about this.

So next year, boycott Candles – Unless Vision Australia reimburse the Deafies that used their NDIS funds to attend. Boycott Carols until Vision Australia practice what they preach and make a world and this event inclusive for all.

Shame on you Vision Australia. You earn the Scrooge of Xmas Award. I hope that you are suitably ashamed.

 

Footnote … For the record … Vision Australia Facebook page indicates that profits from the night were $851 519. …

 

Surviving the NDIS – The Good!

You know. to survive the NDIS for any period of time you have to look for positives. It eats at my gut that I worked in a system that was more focused on high output than quality outcomes. It eats at my gut that I worked a system that had lost its way and where many of its officers simply did not understand why the NDIS was established, nor its legislation. However, there were positives and when the system works well, and together, the outcomes can be awesome.

The bigger positive for me in the NDIS was that the majority of the people I worked with were focused on getting the best outcomes possible. Planners and LACs often get a bad rap. I can tell you that the LACs I worked with cared, and a lot. When they submitted plans that were slashed or when at review needed supports were removed – they hurt. They get angry. They get frustrated. They cry and yes they leave. But make no mistake, without these wonderful people in the NDIS framework, it would be screwed. Hats off to them for keeping up the good fight.

In the NDIA itself there are many good people too. I remember a plan that I wrote for someone that had conflicting information in a report. Truth be known, before I submitted the plan I had not identified the conflicting information. It was relatively minor but had a big impact. The occupational therapist, I am not sure how, had somehow indicated that the participant could dress themselves independently.

This was not the case. The participant has cerebral palsy. They required assistance to dress and brush their hair. Their coordination was such that they could not, for example, put on a bra. The delegate recognised this and contacted me. She let me know that her team leader was thinking of slashing the plan as the result of that report. It was silly really because previous reports indicated that support was needed. There was no way that within a year this person was going to develop the skills needed to carry out these personal tasks, if ever. Common sense would have recognised the error and based decisions on previous reports. But common sense is not that common in the NDIS leadership.

The delegate said to me she had a solution. She was going to extend the plan for three months, pro rata the previous plan. In that time she suggested. I get hold of the occupational therapist  and have the report corrected. This I did. The occupational therapist recognised the error. and amended the report. I worked with the support coordinator to have this happen. Report was received, plan submitted and full support was provided as previous. Truth be known it was mainly my fault for missing the error in the report. BUT, because there was a delegate who cared a crisis was avoided.

This happened often in my time at the NDIS. Delegates would contact me. They would let me know there was problem. Together we would work out solutions so that the participant was disadvantaged as little as possible. In the last year that I worked in the NDIS they introduced plan alignment meetings (PAM) where delegate and LAC would discuss plans and ensure they were both on the same page. I believe it led too better quality plans. The problem was that there were and are delegates who don’t want to PAM because they see it as a waste of their time. I hope the NDIS weeds these people out. They are not wanted and cause great harm.

Deaf people get great benefits from the NDIS. It is not that well known that Deafness is a huge barrier to social participation. Through the NDIS Deaf people get Auslan interpreting and captioning to be able to access community events.  It is true that it took a while to educate the NDIS about the need but I have to say, at least in Victoria, they have provided some great plans for Deaf people.

I well recall a colleague hosting a farewell party for a friend who was leaving. He booked three interpreters for the night with his NDIS package. Party attendees were a mixture of hearing and Deaf. What you would normally see is Deaf in one corner signing away, hearing in the other chatting away. But not now. Everyone interacted. hearing and Deaf alike. Deaf got access to speeches. Interpreters. would help them to eavesdrop into conversations so that they knew what was being discussed. Hearing people would approach Deaf with confidence and introduce themselves and visa versa. It was awesome. It is such a simple thing but brilliant.

I know Deaf people who have used their funding to attend cooking courses and invited other Deaf friends to attend so that interpreters could be used for others. I know where Deaf have combined their funds to attend events so that they have greater access. I even know of Deaf who will book an interpreter with their funds for a friend not on the NDIS so that said friend can access an event. I know of Deaf elite sports people being able to use their NDIS funding to attend coaching camps and team building exercises. It’s brilliant and an example of what can really happen when the NDIS works well.

I remember my first plan ever.  I wrote briefly about this in the first article of this three part series. Participant is a wheelchair user, has an intellectual disability and is HEN fed. Mother was a single mother and cared for her and her autistic son. Communicating with the daughter was very hard. She was close to 30 years old. Needs for the daughter were mostly identified through discussions with the mum. I know some people frown at this, but sometimes it is the only way.

Mum didn’t want much support. She only wanted funding for day services. I outlined the possibilities. Support for care, overnight accomodation, extra hours for day service. Home modifications and the like. Mum was aghast, “She is my daughter … “, she said, ” .. Thats my responsibility.”   I spent some time with the mum convincing her to accept more support. I pointed out she had a son to care for as well who was not yet on the NDIS.I pointed out that if she got sick her daughter might have no support. “What if you go to hospital?” I asked.

In the end mum reluctantly accepted more support. We had some overnight respite. Twice a week a support person would come in and assist her daughter to get ready in the mornings ( that’s all mum would allow.). There was some support worker money available to allow mum to go shopping. Home modifications to ensure the bathroom was safe. Maintenance of the wheelchair. Assessment to ensure wheelchair was ok or needed replacing as it was very old. Some capacity building to see if there was a way to improve communication.

It was all good stuff and helped participant and the mum immensely. I remember a delegate contacting me and asking me if she could put more support in based on the information that I had provided. I called mum and she said no. I recount this story because It was then that I really realised just how valuable and important that the NDIS was. I recount it because I witnessed firsthand just how selfless many carers are. There are people that think carers are trying to rip the NDIS off. I can tell you this is not the case. Often you have to convince them to accept support.

My favourite is the university student with cerebral palsy. She was two years into her degree. Mum had been attending university with her. Each day mum would attend, assist with care and feeding. She virtually gave up her life for her daughter to ensure her daughter could achieve her academic goals. I loved this family. Every time I met them they had cake or curries that they would pack for me to take home with me. Boy they could cook.

I worked very closely with the NDIS delegates to develop her plan. Basically the NDIS funded all her needs that were not based on learning. While she was on campus she had full support for all her care needs. As well as this the NDIS funded transport so the participant could attend social functions and a support person to go with her to boot. There was lots of other stuff in her plan but mostly I recount this story because the NDIS allowed this person to attend university independently. Mum could now go back to being a mum and not a mum/support/transport/Everything person. Terrific stuff.

And sometimes it’s just simple stuff. Wheelchair upgrades, ramps, communication technology, simple things to improve community participation and so on. I had a 64 year old woman who had lost nearly all mobility and relied on her husband for everything. Husband was completely uncomplaining and more than happy to assist the love of his life. A scooter later, transport funding later, bathroom modifications later and she was set. She never tired of thanking me but really it is the NDIS she should thank.

As I say often, the NDIS is the best thing ever for people with a disability. When it works well it is simply brilliant. It creates opportunities that simply did not exist before. It assists with community participation, it provides independence and it keeps families together. The successes are many but sadly we do not hear a lot about them. This is because when the NDIS is bad, it’s really horrible. I would love to focus only on the positives but we cannot. People need to know just how bad the NDIS can be and is. However, we also need to hear the good, because through the good stories we can remind people of the real potential of the NDIS.

All I can say is the NDIS is brilliant. It’s needed and we need to keep it at all costs. But we have to fix it too, because when it goes wrong it causes great harm.

And here ends my three part series. I hope it has provided a balanced insight into what goes on within the NDIS. I wrote it because the NDIS is really a gift for people with a disability and we need to get it right. I hope it helps in someway.

Happy Xmas everyone. If you don’t celebrate Xmas all joy to you too.

 

 

The Bad and the Ugly… My NDIS Journey

This is the second part of a three part series. I have recently left the NDIS fold. This is my view of the NDIS. My first article focused on a general perception of working within the NDIS environment. This Article will focus on everything bad and ugly. The final article will focus on where the NDIS works well.

A friend of mine recently said to me that the NDIS was set up to fail. It was his views that the NDIS had been stacked with public service bureaucrats that had been trained to say no. Their inclination, he believed, was to deny services as this is a bureaucrats mentality. It is all about the government maintaining fiscal control. So the first response of these bureaucrats is to say no and demand evidence and more evidence. Can a refugee come in? – First response is to say no. Can someone get support to clean their house through the NDIS? First response is to say no. He was not far wrong, because as someone who has worked within the NDIS environment for almost four years this was sometimes my experience, far more often than is acceptable.

Achieving those much vaunted Key Performance Indictors (KPIs) is everything. Quality and need not so much of importance. I worked within both NDIA government teams and within partner teams as well.  I can tell you that KPIs are everything. People don’t necessarily matter.

Don’t get me  wrong. The planners and the LACs care. They want quality. The problem is those above are more concerned with numbers. It’s all about numbers of people that enter the scheme. It has to be as high as possible. Whether the plans are not good is less important. Having the numbers is.

This is true at both NDIA and partner level. For those that do not know, partner organisations are the organisations that host the Local Area Coordinators. These are organisations like the Brotherhood of St Laurence, Uniting, Latrobe Community Health, Feros and so on. The partner organisations have contractual obligations. Achieving what is set out in their contracts in terms of KPIs is their number one priority. Quality? Well that’s another thing. Although they will be loath to admit it.

Let me recount my experience within the NDIS in the government NDIA offices. Every morning we had a meeting. A huddle is what we called it. We had a Management Board thing. The Board basically listed how many plans were submitted each day. Nowhere did it ask if the plans were relevant. No where did it ask if more time was needed. Rather, high output was celebrated. Tweety Pie would get an award for submitting 8 plans. For all we know they were shit and not well thought out  plans. But 8 plans was to be celebrated. Well done Tweety Pie, woooooo hooo. We were often admonished if targets were not met.

It was not much different within partner organisations. Every morning you would list on the board how many plans were expected to be submitted. There was a target and there was a daily count. Bugger the fact that plans could be complicated, reports delayed, participants distressed or whatever. Numbers were the thing baby. If you got them woo hoo … if not you could be black marked as slow and incompetent. It didn’t matter if you took extra care to ensure a plan met needs, if you didn’t meet your target … Well,I guess, it was off with your head.

A lot of people will hate me for saying this but priorities within the NDIA and partner organisations are screwed. It’s wrongly targeted mainly towards numbers and less about quality outcomes. Of late the NDIS has begun to focus more on quality. Great!  I hope this leads to a change in focus. Because as it is now, numbers are everything. Peoples needs a distant second.

I have issues with recruitment processes too. Let me share an experience I had. I applied for a job with a LAC provider in Adelaide.  Now I was first interviewed by video. They sussed out my ability and understanding of the NDIS and found it was pretty good. I had been in the NDIS for a couple of years at that time. I  knew how to use all the NDIS systems, the CRM and the like. I had been doing it successfully for a couple of years. My knowledge of disability and the NDIS could not be questioned.

They asked me to do an online test that basically tested my aptitude around Office platforms. Excel, Word and the like. I will be the first to admit to you that spreadsheets are the bane of my life. I am not very good at them. Word not so bad, but spreadsheets pretty crap.

Anyway, I did the online test and failed. Mostly because of my lack of ability with excel. So here we have a person with 30 years in the disability sector, knows the NDIS inside out, has worked with every major disability group … Rejected because he is not very good with spreadsheets. The ability to use spreadsheets is useful but would not be one of my highest priorities to select a Local Area Coordinator. May be I am just odd like that.

And I was head hunted by NDIS recruiters. Hays found me on LinkedIn. They asked if I would be interested in working as a contractor for the NDIS. I said cool.

I was interviewed by two people within the NDIA. This was a new roll out area and the two people interviewed me and found me to be of good quality. They told Hays that they wanted me and bobs your uncle, I was an NDIS Senior Planner/contractor. That is when the fun started.

The NDIA provided me with Auslan interpreters for training that I had already done. I was three years into the NDIS but I had to do all the base training again. To be fair it was a nice refresher but a bit of a waste off my time.

So four weeks in I started the job proper. The NDIS refused to provide me with interpreters. They insisted that it was Hays responsibility, because technically they were my employer as I was contracted to them. Of course Hays wanted no responsibility. Funny that, considering they got some thing like $20 million to recruit people for the NDIS. Both the NDIS and  Hays refused to budge. Jobaccess approved Auslan for Employment but neither the NDIS nor Hays would sign off on it.

End result was that a worker with over 30 years experience in the sector, three in the NDIS environment, was sat on his arse doing nothing for six weeks. I completed every item of online training in that time. I am sure I am the only person within the NDIS or partner organisation that has done so. But for six weeks a person, me and who was probably their most experienced worker, did nothing and got paid for it. Why? Because no-one wanted to take responsibility for my access needs. And this the NDIS, just appalling.

After six weeks they started to give me plans from partner organisations to check for justifications and reasonable and necessary. I would then have to pass these on to the team leader who would then distribute them around the NDIA to delegates with authority to approve because I could not. ( Contractors are not legally allowed to approve plans, it has to be an NDIA delegate under the legislation) It was messy and uncoordinated. But at least I was working. This was their compromise because if I was at my desk doing that I had no participant contact and they didn’t need to fund interpreters. The team leader patronisingly said to me, ” .. I have every faith you can do this.”  Well I would hope so after 30 years in the sector and three years in the NDIA.

But what a waste of skills and experience. First six weeks doing nothing and then just menial plan checking. And they were paying me a senior planners rate.

Then something really weird happened. You see the NDIS had relied on recruiters like Hays to find workers for them. In this new roll-out area nearly every worker was a contractor. This was because the NDIS had not been able to get its shit together to recruit people properly. The contractors could do plans but not approve them. And suddenly the contracts were about to expire and potentially the region stood to lose more than half of their workers in this new roll-out area.

Now consider that the NDS had had three years to prepare to recruit for this new roll-out area.  Somehow they didn’t. Perhaps they always intended to use contractors, somehow I doubt it. They relied on recruiters like Hays to find workers for them.  I can tell you, with hand on heart, that many workers that agencies like Hays had recruited simply fell well below the mark as to what was required. So what did the NDIS do? They told all of the contractors to write a letter, no more than 400 words, as to why they should work at the NDIA outlining their experience and understanding of the NDIS.  Based on these 400 word letters they approved everyone in my team as delegates, bar one. Some were really good and others were complete dross. That folks, is the recruitment strategy of the NDIS … Numbers count, quality not so much. David Bent lives.

Processes and the NDIS should really never be mentioned in the same sentence. The delays that people talk about within the NDIS are appalling and very real. The big downfall was, and probably still is, processing assistive technology. I won’t attempt to explain it fully here but people waited exorbitant amounts of time for crucial equipment like wheelchairs. Not months, but going into years. Some people were prisoners in their homes because they simply had no way to get around.

Home modifications were not much better. This year I assisted someone to get a ramp and a new wheelchair. They had been waiting for over three years. While it was deemed necessary it some how took for ever to get processed. I managed to get it approved and the participant was close to tears. He said  when his ramp was finished he would send me a photo with a sign saying GARY IS BEST. Last I heard there were further delays because ramp quoted did not meet council requirements. But at least he had a new wheelchair with power assisted wheels so that getting about did not leave him in excruciating pain.

I wish I could say this was uncommon, but sadly it is not. The NDIS reputation for inefficiency in this area is well earned and deserved. Their insistence on only base grade technology to save money often means that it costs more in the long run because this technology can be inferior in quality and requires more maintenance. I have seen people with pressure sores because they have outgrown their chair and are waiting for the NDIS to get their wheelchair approval processed. I have seen participants in excruciating pain because they can no longer self propel ageing wheelchairs. I have seen family supports put at risk because they have to lift their family members out of bed, into wheelchairs and into showers without the assistance of lifting technology. I have seen them on the brink of exhaustion – All simply because of the inefficancy of the NDIS.

It is true that the NDIS have worked hard to clean up the area. This is great but it still leaves much to be desired.

My other point of contention is how the NDIS treats parents and family carers. They call these people informal supports. There are a group of delegates and team leaders who insist that the NDIS is not to replace informal supports. In my view some of these take it to the extreme. In my previous article I outlined how Mark Bagshaw was initially refused vehicle modifications because the NDIS delegate said his wife could drive him around. This is an example of the NDIS interpreting the rule of replacing informal supports to the extreme.

There are many people that live at home. I have had delegates refuse support because Mum and Dad can provide the support. But the thing is that the participant might be an adult. They might be 25 years old. Yet the NDIS delegate will rule that informal supports are available and deny or reduce support. Of course this is a misinterpretation of the NDIS legislation.  It is true that the NDIS do not want informal supports replaced, they want families to stay together, so to speak. However, the legislation is also about:

  1. Encouraging independence
  2. Encouraging economic participation ( For both participant and informal supports.)
  3. Maintaining informal supports so that families and support networks don’t get exhausted and break down.

So at what age does someone stop relying on mum and dad for their support. 30 years old? 40 years old? 60 years old? Believe me these are all ages where people with a disability are still living at home. How much support are informal supports expected to provide that is “reasonable”? Do they have to be up all night? Do they have to give up work to look after their family member with a disability? Do they have a right to support for their kids to access things like child care or after school care because these service generally lack the expertise to support people with a disability. My view of the last question and all questions related to work is yes. Why? Because the NDIS was established with a prime goal of economic participation and maintaining informal supports .

Many parents access services to enable them to work full-time. Indeed they often must because in today’s world to pay the mortgage and bills requires both parents to work (Let’s not forget the single parent either). Yet often supports to parents are denied on the basis of parental responsibility. The NDIS do not clearly state what reasonable parental responsibility is either.  Delegates and LACs kind of make it up as they go along.

It is simple to me. Parents have a right to work as many hours as they can and access services to enable them to do so. If they cannot access these services because of their child’s disability then the additional support required is the cost of disability and should be met. But all too often it is not. There is just a hardline view of parental responsibility and a harsh view that the NDIS is not a baby sitting service.

Bilateral agreements clearly state what is NDIA and what is state responsibility. The area of after school care and child care is not well defined. I don’t believe it is the education departments responsibility as the care is usually provided by private contractors. One could say it is the private contractors responsibility but I have no doubt they could go to the Disability Discrimination Act (DDA) and successfully claim unjustifiable hardship. More importantly kids with disability have a right to access activities and interact with peers. These things are crucial for social skills development. I  believe the NDIS hardline approach to this area is wrong and needs to be reviewed because this hardline approach is placing extreme strain on many parents.

My other pet beef about the NDIS is the inconsistency of the decision making. Let us use Deaf and hard of hearing as an example. Some parents get Auslan training in their plans, as they should. As a planner I would encourage the use of Auslan training for the whole family unit. Do it at home with extended family like grand parents so that the deaf child gets access to communication with everyone. Some parents get it, some do not. Some delegates say, “ … Your child has a cochlear implant and hearing aids so Auslan is not necessary.”  

No, I am not kidding. Just last week on little Auslaners Facebook I noted that another family had been denied Auslan. It is wrong. That delegates and many LACS do not understand the basic principle of inclusion and language development, or do not attempt to find out more about it, pains me. Either way the inconsistency is a unacceptable. No family should be denied.

Then there is how they work out how much Auslan Interpreting to provide. One LAC organisation insisted that 6 hours was the limit and refused to budge. They had wrongly interpreted the legislation that states participants have the right to six hours of interpreting for implementation. Somehow their interpretation was that 6 hours was all the deaf individual could get. I had a participant who has a Phd and volunteers their time for various community causes three or four times a week. They worked out that to be fully involved that they required nearly 600 hours of Auslan interpreting a year. She got 81. Meanwhile just up the road a Deaf family got 600 hours between them.

NDIS instructions are that a typical support package is 75 hours a year. However, there may be exceptional circumstances that mean a participant can get more. For example, they may need counselling with their private psychologist. This can be factored in and more than 75 hours can be provided. They may be building a house, going through divorce and so on. Everyone’s circumstance es are different.

A good LAC or delegate will know how to unpack this and come up with an hourly figure per year that is required. I’ve had elite deaf sportspersons get extra hours so that they can attend coaching camps and clinics for example. The legislation allows for extra but sometimes due to lack of training, knowledge or just pure bloody mindedness LAC or delegates degree the 75 hours is what the deaf person will get, and sometimes even less than that. These sorts of incionsistencies are a large part of the reason that the NDIS has such a bad reputation.

And don’t get me started on the lack of support for participants to implement plans. The push to cut back support coordination is misguided. The inability to monitor progress of plans is very real because LAC’s and planners are swamped with just pumping out plans. Often money in plans goes unspent because participants simply do not understand their plans and don’t know how to proceed. It comes to billions of dollars. This was deemed as an underspend by the Morrison Government and directed to drought relief.

It is anything but an underspend it is simply a lack of support for participants to utilise their plans properly. It means that participants miss out on crucial supports and leads to great stress for participants and support networks. I have long felt that both the NDIA and LAC partners need a specialist monitoring department to ensure participants are spending their plans. If not they can then provide the necessary support to do so. This area is a mess and in great need of sorting out.

And I could go on. When it’s bad it’s horrendous. This happens far, far too often. However, there is a lot of good out there. My next article will highlight what happens when the NDIS gets it right. When it’s good it’s brilliant. In the meantime I hope the new NDIS Minister is on top of these issues and is doing all he can to fix it. Early signs are that he is. Here is hoping that the NDIS can become more efficient and consistent because, frankly, the current criticisms are well warranted. It is not just teething problems anymore!

 

 

Don’t Turn Out The Lights …..! My NDIS Journey.

I have just ended almost four years working in the NDIS environment. Most of them were in the Local Area Coordination environment. I was fortunate to spend some time within the actual NDIA too. I can say, with some authority, the NDIS is an enigma. When it is good, it is very good. When it is bad it is dreadful. When it is very bad it is downright tragic and immensely frustrating.

I started in 2016. I was a Senior Local Area Coordinator. I was responsible for around 6 staff.  There were about 15 Local Area Coordinators and between three seniors we supervised these people. I remember being very nervous at the start. Being deaf I worried, as most deaf professionals do, as to how communication would work out.

On my first day in the office the manager called three impromptu meetings on the floor. I understood little. I had to ask team mates what had been discussed. Not a great start considering that this was Australia’s next big thing for disability and here was me, the disabled person, not included. The manager didn’t seem to get the concept of inclusion.

I spoke to her quickly about the issues. She was empathetic but said that because everything was rapid in change and nature she had to relay information quickly. But then on the second day an amazing thing happened. The manager called an impromptu meeting. Without prompting and without discussion a Local Area Coordinator (LAC) sat down beside me, opened up her laptop and began to type out for me what people were discussing. This was the beginning of a wonderful journey with LACs in my team. I can’t speak highly enough of them. They were brilliant and supportive throughout my nearly 4 years.

And this was generally my experience of the NDIS. LAC and base planners of the NDIS were generally disability savvy, bar a few. Generally the lower the ranking the more savvy and responsive that they were. As you go higher up the NDIS ranking, often the less savvy they are. There is definitely a need for more people with lived experience of disability, including disabled people themselves, in the upper levels of NDIS management.

I well remember my first planning meeting. Although I was a Senior I also did planning meetings. I loved them. I loved the contact with the real people. I loved the challenge of using the legislation to get as much as possible from the NDIS to meet participant needs.

My first participants had more than one disability. They were HEN fed. They attended Day Service. They had an intellectual disability and apparently autism too. They were a wheelchair user but needed assistance to get about. The participants was an adult cared for by her single mum. The participant had a brother who was autistic. If ever there was a candidate for carer burnout the mum was it. But she didn’t complain. Indeed, I had to convince her to accept support.

I loved the challenge of assisting participants to have their needs met. The more complex the better. The NDIS is actually pretty well designed for this. It actually has a legislation that is reasonably well written and able to support a multitude of complex needs. It is not the NDIS, per se, that is the problem. It is certain people within it. This is at both NDIS and partner organisation level.

The paradox, I believe, is that so many within the NDIS framework don’t understand the purpose nor the reason for the establishment of the NDIS. Particularly those at management and decision making level. It is probably worth revisiting why the program was set up.

1) It is an insurance scheme. Designed so that support can be given no matter when a person becomes part of the disability family. Mind you, if compensation or road accident is involved, this can complicate things.

2) It is an investment model. If you provide support to people with a disability and their support networks they get more opportunities to be part of society. This can be through work, play, education and the like. Through being active and a contributing member of society participants generate a return for the investment.

3)  It’s the right thing to do. Cos having a shower twice a week and being able to get out of your home only when a time can be rostered to you is a sucky way to live.

4) For many people who have children with a disability it is their life forever. They cannot work and they plan their lives wholly around their children with a disability. They are often supporting and looking after these kids until they and their children are elderly. This is not fair to the support people nor the person with a disability who does not get an opportunity to experience anything else independent of their family.

5) The scheme gives power to the person with a disability.  They control their own funding. They decide how to spend their funding and on whom. It’s not wasted on overheads and money hungry CEOs. Well it shouldn’t be anyway…. Sadly, a lot of NDIS money is wasted on top-heavy management and consultants. More on that later.

These are the main principles as to why the NDIS was created. I strongly believe that if those people up top understood these key principles the NDIS would be in a better place. Sadly, the powers that be, including senior planners, leaders of teams and the like, not just the upper, upper management, have all become obsessed with the sustainability of the scheme. They have become financial guardians rather than champions of the original principles of the scheme.

Anyone working within the scheme whose first thought on a participants plan is the cost is working in the wrong job. Sure, one must consider the cost and the value for money component but primarily they should be thinking, first and foremost, what impact will the plan have on the disabled person’s life. The latter consideration, far too often, gets lip service.

That’s why some poor fellow in Colac got taken to court by the NDIS. He wanted his transport funded to his place of employment, a Disability Employment Enterprise. “No”, said the NDIS. They only wanted to fund 75%, or something like that. The problem is that the participant had to travel more than 150 kms a day to get to work. I was horrified that within the NDIS and Partner organisation, including at LAC level, people thought the NDIS was right.

They suggested that the participant should work closer to home. They suggested that if he wanted to work so far away, that was his choice. They suggested he could move closer and live near work. They argued everyone had to pay their transport costs to work and so should he. Reasonable arguments on the surface, one might think.

But they were heartless and unreasonable arguments. Why? Well because the employment options for this fellow were and are limited. Sure, maybe later he could go on to open employment close to home but at that particular point in time a disability employment enterprise was his sole option. He was not yet ready, nor capable, to live alone so could not live closer to work. Sure, maybe  capacity building could be funded and later he could develop skills to live independently and closer to work. But at that point in time he could not. No, he couldn’t work closer to home because the place of work he had was the closest disability enterprise to him. No, 25 % is not reasonable for him to pay because “others do”. Especially given that he was probably being paid $2.00 an hour if he was lucky. The distance, and therefore the transport, were a valid cost of his disability. But the NDIS were having nothing of it. So they spent millions on legal fees dragging this poor fellow through court. It was and is a disgrace.

Then there was the high profile case of Mark Bagshaw. A wonderful disability advocate who for many years promoted and argued for investment models of disability, just like the NDIS. The NDIS refused him vehicle modifications because he has a wife who can drive him around and, apparently, he could use public transport if he likes.

Now, this is just bizarre because independence and relying less on support people like family is one of the major platforms of the NDIS. He also lives in a rural area where accessible public transport is limited. ( Don’t tell me the NDIS are right because the NDIS are not supposed to replace state government responsibilities like public transport or I will slap you.)

But still the NDIS saw fit to say no. Mark is no shrinking violet and appealed. I believe he won. The point is that no one should have to go through that. No one should be made feel so helpless. No one should have their dignity taken away like this. The bigger point is that the NDIS was set up to provide the things that Mark was asking. Yet still it happened,

Many in the NDIS also have no idea of reasonable. To be fair, reasonable is a hard concept to grasp. Then and again so is common sense. Take parental responsibility. What’s a reasonable parental responsibility. Are parents of disabled kids expected to give up their lives and jobs? Are they expected to get minimal respite even when their kids are bashing holes in walls, biting them and keeping them awake all night? Are they expected to renegotiate their work hours because after school care lacks capacity or skills to be able to support their kids?

Yes, according to many decision makers within the NDIS. The NDIS are not baby sitters they will say. There are examples of where the NDIS will stick to their guns to the point where parents are willing to relinquish their disabled children because they are so exhausted. For god sake, the legislation is clear, maintaining informal supports is a crucial platform. Surely this includes parents?

Then there was my team leader in the NDIS who insisted that parents had to take full responsibility, or near full responsibility, until their kids are 14. Asked to show me where it says that in the legislation she could not. But this happens. This is the way some people who have great decision making power within the NDIS think.

They will insist that support from after school care is the responsibility of the after school care provider. If the provider cannot then parents have to give up work because the NDIS does not fund baby sitting. Not sure where the NDIS principle of economic participation comes into their thinking. The thinking of many within the NDIS, and sadly partner organisations, has no basis in logic nor the legislation. Many just make it up as they go along.

The administrative delays and the illogical decisions of the NDIS are well documented. They happen and the criticisms are well warranted. When I worked briefly as a Senior Planner my team leader took 4 months to approve an urgent plan for a participant that frequently absconded. The participant often beat up her mother. Mum was close to a breakdown. Participant, an extremely vulnerable one at that, was in danger of being homeless. It did not come to that, but it was a close run thing.

These are just some of the stories that show the NDIS at its worst. But it is not all doom and gloom. I worked with a participant who could not leave their home because their Multiple Sclerosis had deteriorated to a point that they could no longer walk. They needed a ramp to get down the stairs. The only way for the participant to get out was for someone to carry them. They had no independence. Cue the NDIS and home modifications and a sembelance of independence is restored.  It only took three years, but at least it happened.

Then there was my second ever participant who required a modified bicycle so she could cycle with her family and friends. She had strength issues and the bike was modified so that she could move the pedals with her limited strength. Believe it or not, the NDIS initially turned her down. Bikes are parental responsibility they said.

The bike she needed was substantially more expensive than most bikes parents are expected to buy and was therefore a cost of disability. I argued that the bike was a tool for community participation, a tool to build muscle strength and a tool to improve coordination. I also threw the vomitus “Ordinary Life” principle back at the NDIS. “Surely”, I argued, ” …there is nothing more normal than riding a bike.”

Eventually the NDIS came to the party and purchased the bike, The parents had to contribute the price of an average bike, about $200. Peanuts, considering that the modified bike was around $1800. Three years later, and after numerous physiotherapist and occupational therapist reports, the NDIS approved the bike. Mum sent me a beautiful photo of her daughter riding the bike for the first time.

I will always cherish the stories as well. Deaf grandpa who got a vibrating alarm clock so that his wife didn’t have to wake him all the time. He was asleep one day and Grandma showed his grand children how the clock worked, Grandpa woke with a start. The grandchild was in raptures. “Do it again Nanny”, they pleaded.

Coaching the LACS was also fun. I’ll never forget during one session one of My LACs was trying to tell me that the participant wanted to be part of a group. She mimed Group using a hand gesture but inadvertently used the Auslan sign for vagina. I laughed and advised her not to use that gesture. She looked at me puzzled for a few seconds, put her hand over her mouth, and said, ” Oh my god , I just signed vagina didnt I?”  I laughed myself to tears for a very long time.

And then the one that wrote in her plan that little Johnny,  “Can now walk but unfortunately cannot stop and keeps walking into walls.” I know Johnny’s issues are serious, but after a giggle fit on my part I told her she might want to rewrite that to, “Improved mobility, but still has issues with coordination.” I have lots of stories like these. The stories and the LACs have made my life the richer.

I am a great believer in the NDIS and sincerely hope it becomes the program it should be and the one that we all dreamed for. It still has a way to go but It can and will succeed. The powers that be need to stop saying it is just teething problems, it isn’t. Six years on these issues are down to people in high places that do not understand disability.

They are quite happy to spend millions on consultants and lawyers but blink at spending it on the people that matter. It is a scandal that recruitment companies can get up to $20 million to find contractors for the NDIS. It is a scandal that the CEO gets over $700 000 in his salary package. It is a scandal that lawyers are paid millions because the NDIS don’t want to pay for essential supports in the name of sustainability. These are not teething problems. They are just sheer stupidity an pig headedness.

But my time in NDIS land has come to an end. I loved every moment of it with the participants and the LACS. I loved the management perhaps a little less. However, I regret nothing.

To the participants, the NDIS planners and, most of all, the LACs who made my time in the NDIS environment so rich, I say thank you. I am a better person for it. Keep on doing what you do best – Challenging the management and getting the system to support people with a disability to the maximum. Keep up the good fight and in the meantime dont’t turn off the lights when I leave.