Rebecca is someone who I have been friends with “online” for about 16 months now. It was interesting when I looked back through our messages to see how we had first connected and it was because we were trying to find a home for a dog that we had sold that had since been neglected and was now in the pound. Rebecca was going to take the dog for us and when she told us she was on disability, John and I said that we would pay the $220 fee to the pound to get the dog out, if she was happy to take him in and give him a good home. So it was a feel good story from the start between Rebecca and myself.
Since John and I have started our disability support agency, Coralville Care, I have been following the sector very closely so that I can obviously know all that I can so we can deliver the best service to our clients.
I had seen Rebecca share a few posts about her journey and decided to reach out to her to see if she would mind if I shared her post about her artwork, which of course she did not mind and it lead to us chatting on messenger for an hour or so. During this chat I got some real insight into what her life looks like living with disability and how amazing her support team are. I really got the feeling that these people who support Rebecca truly make such a difference in her life and that just gave me all the warm fuzzy feels. How beautiful that these support workers are not only helping Rebecca with her physical disability but they sit down and work on her mental health also, which is where alot of her beautiful artwork has come from.
Anyway – I had seen Rebecca share this story which must have been extremely confronting for her to share, but it’s such a powerful story, I know that it will help many others in her situation, so with Rebecca’s permission, I share her post of her story here.
I want to put up some positive results from the. NDIS. Even though I have gone through alot, each experience has taught me something new especially how to deal with the next issues head on.
From the very first packaging in 2017 I was going through alot. I had some very personal issue happened and I only found in January 2018. I had a package that was needed well before my carer went into carers fatigue.
I had a very incompetent service provider and it caused my personal issues go very dark. I was driven to the point where I had to sit for nearly 3 days plus in my PJ’s, feeling fearful, alone plus I had a high level autistic son at home. Here I was at my service provider begging for my support in the waiting room from 9am-3pm each. day in my uncomfortable wheelchair. finally the service provider realised I wasn’t going to go away. I did not know I had an NDIS package let alone it was adequate enough to get me to the next package.
The organisation said the package I have is in adequate for my care. Told me to bring my own laptop the next day and made me do a review by myself.
Every time I told them, I can’t do it, tears just flowed down my cheeks. They just got more angry and looked at me like I was an idiot. At one point I was told to stop crying and suck it up. At this point my marriage of 20 years had fallen apart, my career was my hubby he wasn’t there. Finally got the review in? You have still got a large amount of money sitting there needs to be used. I explained the situation and they disconnected the review, then forced the organisation to use the funding that was already sitting there not being used.
Services were provided after I found them myself. A few months later I got a call from the fraud squad stating X amount of dollars was stolen out of my and my sons NDIS.
Then on top of this mess I was informed the boss of my really good personal care provider left. The position as I said before was left with an incompetent, unsympathetic, control freak, always right and always putting up with his passive aggressive behaviours. He was driven by control and his theory was always right.
I went to a very dark place and was not getting the correct help. It was the. darkest place I’ve been in a very very long time. Just say if my sister didn’t turn up, I wouldn’t be here talking to you about this subject. I had to get support behind me because one of my weaknesses was not able to decipher if someone was manipulating me or truly my friend. 2018 to 2019 I went to a new service provider and all my services were changed. We’ve had major issues to iron out. but what has helped me grow and stop living in fear wasn an excellent (I cant’ recall the person’s title for plan manager who give authority to clear funding) this worker has got my back. She is willing to listen even when I’m in a meltdown and she knows that my autism overtakes my language skills, never judges me. She worked out plans for my personal care and finally breath a little. Also having a great service provider with terrific support workers has built my confidence. We all work as a team and come up with excellent plans for what is expected.
For an example the cleaner for my home has a plan for weekly, fortnightly and monthly expectations they must have done.
Basically everyone is given a plan of attack and what their role is for my care. Everyone on my team has been provided a well thought out plan on how to monitor or determine through different mechanisms I do naturally to cope with stress or the environments. This way there is no shock or unsure what to do.
For example. I rub my nose hard it’s a sign that now I’m in overload. They need to step in and talk to me calmly. then asked very simply what is stressing you or just take me out of the environment. Because I can nearly broke my nose without even knowing I’m doing it. Also by 2019-2020 plan we been fighting for a wheelchair for 5 years either through wheel/able before NDIS.
My new package in 2019-2020 I was accepted finally for my long-awaited wheelchair that was urgently needed. I feel a lot happier and the dark clouds just shifting a bit. Through talking to the NDIA I was able to be connected to ABI professional and she has taught me skills. She has taught me not to take so much personally and showed me that my ABI is permanent. Somethings I don’t have control over and I must stop flogging myself to live up to an impossible expectation. The disability that is taken over my body, can be controlled to a point.
I’ve written this to give hope to people not to give up. I’ve been through a lot but slowly we are putting the jigsaw together. Through having proper supports and equipment that is slowly coming is giving me hope. I always think tomorrow will be a better day. Sadly there’s others worse off than myself. I am slowly learning to stand up for myself and accept who I am. One thing I’ve learnt since being on the NDIS nothing is easy but the fight is worth it.
I’ve learnt to make sure everything is written down so everyone is on the same page. Having everyone with a plan manage sheet has given everybody the why, how or what I am doing. This method is bringing out a much better result. Even getting my NDIS provider to have meetings. with each and every one of my co-ordinated supports has given me the power to say what I think I need. I am slowly learning that I am in control and it’s okay to say this is not right.
And I’ll make it clear my disability doesn’t define me it makes me unique and having my own secret superpower lol. This system works and can be changed whatever needed. It helps in meeting to set goal that can be reached. But in my goal plan a back plan for emergencies. This really helps with having my husband who’s my career with recovering from careers fatigue. We are getting support while he recovers and I am grateful. I hope the calmness keeps flowing like it has in this package since March.
My new service provider since 2018 has been cleaning up the mess left from the old service provider. Has finally to a point given me a fresh start without incompetency to do their job. I’m no long chasing payment for outstanding bills and equipment. Yes there is issues but they are finally breaking down.
I don’t think there are anymore words that I can say to finish this article other than to say thank you very much Rebecca for sharing your story. I am certain everyone that reads this blog will agree with me you are one truly amazing, inspiring lady and I am grateful that through some random mistreated dog, our pathes crossed and we became connected.
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