Interview with Desney King on her experience of the NDIS

Desney King describes herself as having been ‘a very fit, healthy, full-on working woman of sixty’ when her first stroke hit. She was a highly regarded book editor, well known particularly for her work on complex non-fiction and illustrated books.

 

Over the past five years, Desney has had five strokes. As a result, Desney has experienced changes to her cognitive capacity, general muscle weakness and persistent, crippling fatigue. She is almost entirely housebound and unable to stand or sit up unsupported, so lives mainly on her bed.

 

Desney previously shared her stroke experience in an interview focusing on what life is like when your stroke recovery is not what you hoped for. Desney discussed the role acceptance played in her life after stroke. In this interview, Desney shares her personal experience of the National Disability Insurance Scheme (NDIS).

 

Desney, how did you find out about the NDIS?

 

I found out about it through a home care agency that was providing me with a cleaner once a fortnight. The woman coordinating the NDIS there contacted me and said, "You're just on the border line of the age cut off for the NDIS, but I think you're eligible for it. I'm going to see if we can get your application done in time."

 

That was really the lucky break. My application was done and accepted really easily. It’s all been simple from there. The whole experience with the NDIS, so far, feels like there's been an angel sitting on my shoulder looking after me. It’s really a huge thanks to my home care agency.

 

Before this, was home care the only service that you were getting?

 

Yes. Now I realise there could've been a lot more help available to me.

 

After you were told you were eligible to apply, what kind of process did you have to go through?

 

I found the NDIS process the polar opposite to the Centrelink process. The disability pension application form was 68 pages. It was four pages for the NDIS and the only supporting document they required was a response from my GP to their questions. In total we probably submitted six or seven pages. The wording of the documents is all supportive and “we want to help you”. It was approved within a month I think. So very smooth, very supportive, and caring.

 

How did you go about deciding what services would be the most helpful to you?

 

I didn't have a clue. My kids and I have talked about this quite a bit. We had no idea what might be available. If you don’t know what exists, how do you know what to ask for?

 

The NDIS has area coordinators that work directly for the Scheme, and I’ve got a great one. He basically led us through it, my kids came and sat in on those meetings. He came to me, no debate, no being told you have to come to us. He was the key. He suggested an occupational therapy (OT) assessment, which was central to opening everything else up.

 

What was the OT assessment like?

 

The only thing that I've found problematic with the NDIS is their IT system, their portal. Their portal is great and it's very easy to navigate, but it's isn’t always working.

 

I couldn't find an OT through the portal. I ended up Googling and found this woman who was NDIS registered. Again, fantastic find. She completely gets my situation. She suggested I would benefit from a wheelchair to help me get out occasionally ­– previously I had hired one if I had a medical appointment. I thought this would be good, but it has been a revelation because now I am getting a wheelchair custom-made.

 

The OT measured me here at home. She even measured the angle at which my bed pillows prop me up. She came out with someone from a specialised wheelchair company who brought this extraordinary sample wheelchair. From this meeting, she has prescribed a customised wheelchair which will be built for me via NDIS funding.

           

It's got a back that slants back just at the right angle with a headrest that can be adjusted millimetre by millimetre until it's perfect. The back has sort of wings that come around the side to support me. The seat is air cushioned and can be adjusted so that it's a smooth ride regardless of the terrain. That’s so it’s comfortable when somebody takes me for a walk.

 

When someone takes me for a walk! An impossible dream is now a possible dream.

 

When I was sitting in the sample wheelchair I burst into tears. For the first time in five years I was putting no energy into sitting up. In that moment, that sweet spot you know? We all just went "Yes!”

 

So we'd been through all that and I was exhausted. They helped me back onto the bed and then the wheelchair company representative pulled out this big wad of metal discs and said "Now, what colour would you like?" I said, "Purple." And he said, "Which purple? There's a choice of purples." So it was just, wow.

 

That is so cool.

 

So cool. What the OT does is write a prescription for that wheelchair and then submit that to the NDIS planners for them to approve the funding. This takes time, it'll probably take three to four months before that wheelchair arrives. However, it opens up the strong possibility that someone can take me, maybe every week, for just a walk down the road. I could possibly even build up the capacity so that I could be wheeled down to a car and taken for a little drive.

           

Where I live, I'm lucky that nature's very close. Taking me to some bushland nearby in the wheelchair, which is just amazing ... the dream beyond that is to be able to be driven far enough to get to the path that goes by a beach. This wheelchair has sparked explosions of possibility that weren't even in my thoughts a few months ago.

 

It wouldn’t have been possible without the NDIS and the wonderful people working in that system, particularly my OT. She's looking into other equipment for me. She knows about things I didn't even know existed. Yeah, fantastic.

 

That sounds great. I like the fact that you could choose the shade of purple. The idea that someone can actually choose the shade of purple they want for their wheelchair that's hopefully going to get them back into the community and into nature, that probably sums up what we all want the NDIS to achieve.

 

I think yes, that's true too. The whole process, exactly as you say, is to get people out into the world. The wheelchair guy, he said "Okay, we're going to get you back out into the community" with absolute confidence. He's been building wheelchairs for people with disabilities for 25 years. When you're in the hospital system or the aged care system, usually a wheelchair is a wheelchair is a wheelchair.

 

Will the NDIS help you with anything else?

 

My NDIS area coordinator also told me that I should explore having a carer come in. I thought "I'm living independently, why would I need a carer?”

 

Anyway, I contacted an agency. Again, they've turned out to be fantastic. A lady came out, sat with me, and said “You know the carer can do many different things”. I asked would she help me sort through all this stuff that's accumulated over the years. I haven't got the cognition or physical capacity to do any of that. She said, "Yes, absolutely, that's what they're here for”. Can they repot my pot plants? “Of course, even go to the nursery for you. They can go out to the bakery and buy you a cake”. Again, a whole world of possibilities that didn't exist for me for the last five years.

 

That kind of sounds like a fun job, really.

 

I know! I know! Again, apparently this is not necessarily the case with all agencies but the representative of this agency said, "Okay, well you tell me exactly who you'd like. I'll find someone who I think is right, bring them to meet you, and you can decide if you like them or not”. And again, that whole philosophy in NDIS.

 

I thought about it for a few days and got very brave. I decided to try this new spirit of actually asking for what I would really like. I said "I would like someone in their twenties who is left-leaning politically, passionate about the environment and passionate about human rights”. The representative from the agency didn't even blink. She said "Okay, fine. I'll go and find that person for you”.

 

And that's exactly who she found. My carer went to school with my daughter as it turns out and lives locally. She's all I asked for and more. We share many other interests in common. I initially asked her to come two hours a fortnight, but have increased that to weekly. I've got enough budget in that part of my NDIS plan to increase that occasionally to include short outings if I want to, once I have my wheelchair.

 

My NDIS coordinator and my OT can ask for that budget to be reviewed and increased again if we find that it’s needed. Because my carer can also take me on walks in the wheelchair or take me in the car in the wheelchair and things like that. So the possibilities keep growing.

 

Is there any advice you would give any other people that are going through the process?

 

I know we've spoken before about deep acceptance. I think before deep acceptance comes shock and a process of coming to terms with whatever has knocked you. Then arriving eventually to deep acceptance, which then liberates you to make the most of where you are now. To work best with what you've got now.

 

But for me at least, this process is part of accepting that yes, I am now disabled. It’s that one word, "disability". One of the NDIS questions to my GP was whether my disability was life-long. And he said "Yes, definitely lifelong disability”. Maybe that was a shock for a moment, but it was the shock that jolted me to a very helpful acceptance.

 

So, I would say accept – deeply accept – your disabilities and work with them rather than fighting them. That will give you access to this whole amazing world of support and possibilities that you probably didn't know existed. And the other advice would be to be patient. Patient because the NDIS is a massive government scheme, and it's still being rolled out. I think the systems are very good given all that, but nothing's moving fast for me and I'm sure for other people too. But various people have mentioned along the way that it's easy to help me because I'm not impatient.

 

It’s obvious they're doing everything they can, but it has to be done through process. It's very clear the process setup within the NDIS, the system is very defined – as it should be – but also aimed at being supportive and caring. Work within the process, don't try and rush it.

 

Any last thoughts about it?

 

I guess it's worth saying, for a stroke survivor, we all work so hard in the weeks, months, years after the stroke to recover. There’s a key question in the eligibility test. Is this a lifelong disability? And I think most stroke survivors – certainly in the early part of recovery, whether that's months or years – would say no. The medical people would probably say no, because people at that point are still aiming at recovery. I think that makes the NDIS criteria particularly difficult for stroke survivors. Maybe it’s easier for people further down the track in the recovery process for whom it's clear that this is what you're living with now.

 

What I'm more aware of now too is that the whole disability sector, which of course has been working hard for a long, long time, is now very enabled by the NDIS. There are people working for the NDIS who have a great mindset of wanting to help people with disabilities to live a life that's as close to normal as possible.

 

That's the revelation. They're well-resourced and very proactive, kind people – all the ones I've encountered anyway. For me, it’s been worth it if I can have a wheelchair and take it along a bush track. A magic chariot. In a nice shade of purple.

 

More information on the NDIS can be found on their website.

 

Contact StrokeLine for advice on 1800 787 653 or email strokeline@strokefoundation.org.au You can also ask StrokeLine a question using the “Ask a health professional” tab in our Community section.