Connect and Grow Magazine - Edition 4 - December 2023
We have recently expanded the Uniquely Me Collection to include the following items:
Empowering Wellbeing Card deck
Bracelets - beads and charms
Rings - great for self-regulation and calming
Uniquely Me book
We have raised money from the sale of the products to purchase gifts for children for Christmas.
We have been able to give these toys to different community groups, so they have them ready for Christmas.
This month, we are sharing Andrea's story.
Andrea reached out to us for some assistance with finding the right support worker after her support worker was found to be overcharging, and she was close to running out of funds. As you read her story, you will see why this is a huge issue.
" My legs no longer work due to progressive Parkinsons, now I need even more support than I ever have!"
Andrea is 62 and has shared with me that for most of her life, she has been exercising, running marathons, and always helping others; she used to work as a nurse. Ten years ago, she was diagnosed with Parkinsons' disease, and slowly, she had to give up running marathons and fun runs; she had to stop nursing and find a new way of providing for herself.
Andrea said she did her best to stay positive and find new things that she could do and part of that was some volunteer work with children until she couldn't. "I had to learn that instead of helping others as I have always done, I have to accept help!"
After a third attempt to access the NDIS, Andrea was finally successful, she had a support coordinator, allied health professionals and a support worker, the support worker was essential as Parkinson's' progressed, especially since she lives on her own, with no family nearby to call upon for assistance, especially on her bad days.
Andrea shares her story here:
" my first plan was the typical one that is all about the assessments; you feel like you have to constantly tell your story and provide to everyone that you have a disability. I would have stopped this ongoing retelling of my story if I hadn't needed the assistance and support. It really is simple: I have Parkinson's disease, and I struggle to shower and dress myself, and now I am unable to walk; I can stand for short periods of time as long as I have support.
I went into the process of learning to accept assistance, and this was not easy for someone who was so independent.
It was during my 3rd plan that things started to go wrong. It took months to find the right support workers, and eventually, I gave up on support coordinators who actually listened to the person. The support workers I had were not NDIS registered; they were independents, and each of them informed me they understood Parkinson's and had experience; however, over time, they slipped up, and I learned they had no idea about Parkinson's and how to support me; they had no qualifications. I was prepared to give them a chance, but they were more interested in being paid the maximum rate they could be, and when asking for assistance, I was met with many huffs and puffs; I felt like I was a burden.
"Qualifications are important!"
Whilst I believe in giving everyone an opportunity, not understanding what Parkinson's is and what I would need in the way of support meant that when I asked for assistance when I required support workers and support coordinators who understood me, I found it hard to find anyone with qualifications. I did end up approaching a few different companies and found that they started charging me for hours that staff did not work, which impacted my funding and eventually left me without any support.
Without support, I cannot go to the bathroom or get dressed; I am unable to leave my house. I felt trapped by the behaviours of the multitude of companies and independents who had no insight into how to work with a person such as myself.
I was about to give up when I saw a lady by the name of Jacqui Grant, respond to a person's question about setting up their sole trader business, her answer was practice and I was so relived to see that someone out there is reminding people that understanding business responsibilities and duty of care are so important. Later that day I found Jacqui's website and called her. I felt instant relief; she gave me over 8 hours of her time to help me understand my plan and interview both independents and companies to find the right people for me. Still today I am so grateful for the support to get the right funding in my plan and have people that understand my requirements of support, that qualifications are important to me, and more important than that, people who see me as a person, NOT a bank account. Jacqui's assistance, knowing I couldn't pay her, showed me that there are people in this world who do care and that while she has her own business to run, she was happy to support me over the video calls, with me in Perth and her in Melbourne."
When I asked Andrea what advice she would like to share with others this is what she shared with me:
"If you are going to work in the disability area, it is essential you have a good understanding of the disabilities of the people you are providing support to and that you listen to what they require, as we are all different. Some of us will have disabilities that will continue to become worse. It's important to understand that we will have our good and challenging days.
Set your business up properly and understand the code of conduct, duty of care, how to invoice correctly and that you are legally responsible for everything you do (I have a Diploma in business management and compliance). It doesn't have to cost a lot to have everything you need, such as your policies and procedures; if need be, look at Jacqui's website. She has them all ready for you.
Whilst my body can no longer do what it used to, my mind is still active, and I can speak for myself. However, many people with NDIS plans are not. These recommendations have been released, and I have read them all; they will help make the NDIS and services accountable and, hopefully, more people who can understand they are running a business that involves caring for others.
Set your business up properly and show us respect and dignity."
*** Please note the photo used is NOT Andrea for privacy reasons****
To purchase the Uniquely Me book or order your coffee mug ( jewellery will be available in January 2024, for everyone to order), Uniquely Me
Written by Jacqui Grant
(C) 2023 Connect and Grow Magazine November 2023 Edition 3
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