Sometimes it is okay to be a KAREN, part 1

Hello everyone! For those of you that do not know me, my name is Karen Townsend, and I was diagnosed with LOFA at the age of 32. Those of you that do know me know that I do not like it when the media or society in general stereotype certain people and refer to them as KAREN, and I find it offensive and a type of bullying. A personal name should not be used to describe anyone’s actions, regardless if you feel it is justified or not. I try to live my life as non-confrontational as possible, so it can be offensive when my name is used in a negative way. That being said, I will assure you that it is definitely okay to stand up for your rights, especially when the NDIS is involved. I am doing a series of blogs where I will focus on issues relating to the NDIS and how they affected me, in the hopes that everyone can learn from them, and I am hoping it will be helpful to everyone as well. I will try to get the most detailed information as possible, with the closest resolution and outcome.

First let me go back to when I was first accepted to the NDIS. I was new to the whole system, and I did not even know the difference between a support worker, a support coordinator, or a plan manager. To me they were all exactly the same. Nay, Nay, I learned the hard way that they definitely are not the same, and it is extremely important that you know the difference between the three. If you are plan managed, it is important you find a very good support coordinator, it really makes all the difference. In following blogs I will be focusing more on this, but for now I will just give you the basics.

I have had 3 support coordinators prior to the one I have now, and honestly before my current coordinator I never even heard from any of my prior ones. Worst of all, I was not using most of my funds because I did not know how to allocate them myself. My coordinators honestly were not doing anything for me, and they never even checked in with me. What is really sad is that some of my past coordinators were not even around when I called and had concerns of my own. My plan never got sorted, and I missed out on a lot of services that I could have been utilising. I also was not exactly sure how much funding was left in my plan. When it came to support workers, I never seemed to get the same person more than once because they were on rotating shifts. It was very frustrating because I always felt like I was repeating myself to everyone that showed up, and as you all know, explaining FA to people that are unfamiliar with it is extremely annoying, especially when you have to explain it over and over and over again.

I also never really had a choice of equipment I needed because my OT made these decisions for me, and usually it was for items that I rarely use because they really do not suit my needs. My OT arranged trials, but usually they were not immediately, sometimes they were 2 or 3 months from the day the equipment was decided upon. If my OT deemed it acceptable then that’s what I got, even if I did not feel as if I needed it. If I requested something but my OT did not think it was right for me, then a trial would not even be arranged. Sadly after some of this equipment arrived I felt like I was stuck with it. I finally had enough and started arranging trials on my own. I was told by my OT that I was not allowed to do this, so I took matters into my own hands and called the NDIS directly to arrange a meeting.

This was the best thing I could have done because they were so helpful and I learned so much! In this meeting I was told that I could arrange my own trials, and an OT was not required to be present until I narrowed my selection down to the item I liked. In other words, if I want a standing frame, I can call different mobility stores and trial a variety of standing frames until I find the one that I like the best, then I can arrange with my OT another trial of the favourite one, and have them present at that one so they can write up their report. Of course they will have you believe that they need to be present for every trial, but that is not the case at all! I strongly encourage everyone that has any questions or concerns about their plan to set up a meeting at your local NDIS location, you would be surprised how much help is available. And it is not just for plan managed either, it does not matter if you’re self managed or NDIS managed, they are there for everyone!

The main thing I took away from this meeting is that we are more in control of our plans then we realise. Luckily I have a wonderful service management team in place, (they are the ones that pay your invoices and deal with the financial end), so I decided to remain with them, everyone else had to go! In one day I literally fired everyone else, after doing extensive research to replace my team, and of course I gave everyone the proper amount of time that I originally signed in my service contracts! I literally made a fresh new start. The change was noticeable within the first two weeks. It has already been a few months and I could not be happier, and I never once regretted my decision. Most people would have you believing that you should never switch midway through a plan, but that could not be further from the truth, although I would not recommend doing this often. If you find a good support coordinator, they will do the majority of the work for you, and that is why they get paid the big bucks, and good ones are worth their weight in gold! I am now revisiting items I was told were not worth pursuing.

Stay tuned for more blogs on my upcoming trials