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.

 

3 thoughts on “Don’t Turn Out The Lights …..! My NDIS Journey.

  1. Gary I second EVERYTHING you’ve said- a very succinct summary of the situation! Thank you for your time there and for writing this. Whilst there is a need for sustainability that should NOT stand in the way of ensuring someone gets the support they need. For way too long others have made the decisions on what will be funded and that needs to change.

  2. Boy, do I wish I had you as my planner!! Instead, I’ve got a ‘broken planner’ who doesn’t even know the legislation, requirements or regulations. She’s bullied, intimidated and gaslighted me to the point of ridiculous. I have asked for another planner over a month ago but still waiting. All my home, vehicle and AT was denied, I’m housebound and have limited mobility and struggle to walk up or down 15 spiral steps every day and no one in the NDIS cares. I’ve been approved for an electric wheelchair but, I cannot have it as I have no ramps and it won’t go through the door and it would have to sit out in my yard. I live in a rural area with no transport or shops nearby. NDIS just doesn’t care.

  3. As the father of a 7yo profoundly disabled child who has been through all NDIA has to offer both good and the very bad from day 1 it is the first time I have read a real view of the issues from within despite being through AAT twice and internal review of every plan. I do have high Hope’s for the scheme but have found issues with upper management the unseen who sign off on large plans that never see the participant.

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