I worked in the NDIS as a Senior Local Area Coordinator and Senior Planner for almost four years. By and large I loved my time there. I loved meeting people with a disability and assisting them to develop the best possible plans that they could. People with a disability and their families were why I turned up every day. My colleagues, The LACs, were also a joy to work with. I loved mentoring them and assisting them to understand all things disability. The management, well I’ll say nothing because this is a positive post – But BOOOOO HISSS to many of them. That said, many of the management were brilliant too and bent over backwards to make things happen.
I believe in the NDIS. I think that when it gets it right, it’s brilliant. Sadly, outcomes upcan be very inconsistent. Skill and knowledge levels across the NDIS and LAC organisations are also extremely variable. This leads to many plans being a dogs breakfast. Even now, and I am not working in the field, I get contacted regularly by people with a disability for advice and assistance to develop or challenge their plans. I got myself a six pack from Bevo recently just to prepare him for his first NDIS meet. Call it a perk because I don’t get paid for it. Still, I get a great deal of satisfaction assisting these people as best I can.
Over the next couple of weeks I intend to share some stories of the good things that happen in the NDIS for participants with whom I worked. I was very privileged to have worked with them. I spent time in their homes sometimes They shared some of their most personal information with me. I was always struck by how humble they were. They always, without fail, met me half way with my communication needs. They often made me feel ten feet tall.
Today I want to talk about Kate. It is not her real name. Kate has a genetic condition that impacts on her muscle strength, coordination and cognitive abilities. She has a sister who has the same condition. She was my second ever NDIS participant. I rang her mother through the National Relay Service to set up an appointment. Mum suggested that we meet over Facebook Messenger so that we could type to each other without the need of a third person. I pointed out that this probably had some privacy issues around it. Mum didn’t care and that’s how we did the plan, through Facebook Messenger no less. (Mum’s choice mind you, so get back in your box all ye nae sayers.)
I absolutely loved the mum. She was cheeky and funny. She loved her daughters to death. We developed a plan for Kate that saw some support through a support worker so she could participate in swimming and other things. The rationale behind this was that having two children with a disability sometimes made it very hard for the parents to support them properly. This support was approved. Surprisingly, because NDIS are big on parental responsibility.
But you know what? Mum never used it. She said she felt awful at the thought of not being there for her daughter. She said it was her job and she didn’t want anyone else doing it. At review time she removed all external support for community participation and focused fully on capacity building. Speech, physiotherapy, occupational therapy and that sort of stuff. This is common. So many family members refuse support from an outside provider, simply because they see it as their role. No amount of persuasive argument about the need for a break sometimes could change their mind. I was always humbled by this attitude. That’s why I get so angry when people say that there is too much of a sense of entitlement in Australia today. It just isn’t the case most of the time.
But the big thing for Kate was a bike. Her family loved bike riding. she wanted to ride with them. She wanted a specially adapted bike so that she could pedal a bike despite her low muscle strength. I made a few enquiries and found a company that designed bikes just for that. To me this is what the NDIS is all about. People in the NDIS love to wax lyrical about “An Ordinary Life” – (No vomiting please!) What is more ordinary than a child riding a bike.
I discussed this with the NDIS. The person I discussed it with said NO! Bikes, they said, were parental responsibility. I argued that this was certainly the case but that most people didn’t have to pay $2 500 for their kid’s bike. I argued that it was surely the NDIS role to assist to pay for this extra cost to modify a bike. The NDIS person was having none of it.
As I do, I completely ignored the NDIS advice and put it in the plan. It was approved, subject to assessment and quote. This is where the long journey to get Kate a bike began. The assessment and quote were dutifully completed and submitted. But the NDIS refused to approve it. They said it was parental responsibility. A complete Cockwomble of a decision.
By the time of Kate’s first scheduled review I was no longer her LAC. Being a Senior LAC meant that the new LACs that were recruited took over some of my caseload. I remember just before Kate went to her new LAC her mum came in to the office to give me cake and Tim Tams. Kate was a really great kid. I was really sad that I hadn’t been able to get the bike over the line. I encouraged Kate’s mum to keep trying and put it in her new plan.
The second plan came and went and still the bike was not approved. There are people within the NDIS who are, frankly, heartless. They have no idea of the principles of the NDIS or of how the NDIS can facilitate community and family participation simply by approving simple things like a modified bike. It is absolutely the NDIS responsibility to fund these sorts of modifications. But no, they were adamant, it was parental responsibility.
So entering into the third plan mum decided she needed a more personable LAC and requested that I do the review. Of course, I was more than happy to do that. The previous LAC had done nothing wrong. She developed a great plan, added the bike again but it was refused.
I was determined to get that bike. Mum was happy to keep trying. She was just grateful for the therapy hours that she was getting. But that bike, I wasn’t giving up and neither was mum. I looked at the notes. And you know what? – The NDIS were saying that the bike was refused because it was parental responsibility AND that it had no therapeutic value to Kate. I was flabbergasted. Apart from confidence, fitness, coordination and muscle strength – no therapeutic value. How short-sighted could they be?
I set about getting therapist reports to show how bike riding was going to benefit Kate in so many ways. Build confidence, help with participation, build muscle strength etc. I told mum to get the physiotherapist to write a report outlining how the bike was going to help with coordination and maintain Kate’s muscle strength. My LAC colleagues insisted that it was not going to happen. They said the NDIS would not approve it. But they did. YES they did. You should have seen my fist pump when they did.
Kate and her mum had to jump through hoops and it only took three years to do it, but it happened! Shortly after the approval I started a six month stint with the NDIA as a Senior Planner. One day, on Christmas Eve no less, I received an email from Kate’s mum. Attached to the email was a photo of a proud Kate sitting on her bike. The smile on her face was priceless.
A little tear of joy escaped the corner of my eye, as it does now as I write this. Just a small thing that the NDIS can do to make a difference. An adapted bike. It is my favourite memory of my time in the NDIS. These are the things that I miss, just making that little difference in a persons life!