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  • Writer's pictureJacqui Grant

Uniquely Me

Connect and Grow Magazine - Edition 5 January 2024

As we enter 2024, we are excited about adding to the product range for those interested in purchasing items.

We have self-regulation jewellery, including rings and t-shirts, that are coming very soon, and as the weather cools, we will bring you hoodies. 10% of the sales of the products go back into the community.

This Month, we are sharing Max's experience with living with a disability.

Max is 22 years of age and was diagnosed with Down Syndrome as a child. His parents, Mary and Paul, were raised with his two older sisters.

Max has been keen to get a job and move out of home; however, he requires assistance doing some daily tasks.

Three years ago, Mary and Paul helped Max apply for NDIS. Before this, they had been working with him to teach him independence. Initially, he was declined for NDIS as he was seen as too separate. Eventually, Max received approval for the NDIS plan, and things were going well until the support workers decided not always to show up.

Max relied on the support workers to come to the house and help him with meal planning, shopping, cooking, applying for jobs, and teaching him the daily skills required to live independently. Max had two support workers, both independent support workers whom Mary found and introduced to Max.

When I met Max, he wanted to share the cookies he had made and how he could now make his bed. He was full of smiles and asked if he could hug me as I left. Max was also keen to share with me that he wants a job as a personal trainer as he loves exercise and was excited to hear that I am a personal trainer.

I could have spent so much more time with Max and Mary than I did; however, we each had appointments to attend.

Max told me how he loved cooking, but he forgot things like turning the gas off, and he told me how dangerous that could be. He has excellent insight. However, remembering things and not becoming distracted are the main issues with Max and achieving his goals of living independently.

Mary shared how, initially, his support workers showed up, and they significantly interacted with Max; they spent 4 hours twice a week with him, so each of them had 8 hours a week in total. However, they were not as familiar with people with Down syndrome as they had both said, and one had said he was into fitness and a personal trainer; however, he spent a lot of time sitting on the phone and not engaging with Max. Max initially didn't notice; however, over time, it became clear that the support workers were not interested in getting to know Max and helping him achieve his goals. There were days when Max was left at the train station as they did not pick him up to bring him home after his classes; this put Max in a dangerous situation as he had no way of getting home.

Mary asked each of the support workers to show their business process, and they both informed her that they didn't have any paperwork, just the service agreement; they refused to show their qualifications or first aid, and this was the point where, after asking multiple times, them simply not showing up for shifts and putting Max in danger, Mary decided to let the support workers go.

They complained to the Quality and Safeguards Commission. They were told that because the business was not NDIA registered, they could do nothing as neither person answered calls from the Commission nor were they on the registration database to be removed from. Even though there was a near miss when the support worker left Max at the train station by not showing up for the shift at all and being unreachable, only to show up the next day, it was enough for Mary and Paul to decide not to continue with NDIS plan and to have other strategies in place.

They decided to hire someone themself and use their own money to help pay for the support to help Max get a job and learn about money handling, household tasks and more.

Max works two days a week at a cafe and is still keen to learn to become a personal trainer. He enjoys reminding people of the importance of a healthy diet and loves to laugh with the cafe's customers. His private support worker helps him get to work and home again and is there if Max needs him.

Max is excited that he can save money, and his parents said the stress of having unregistered support workers who appeared to be doing the job just for the money and not

accepting responsibility left them feeling that the NDIS in its current state is broken.

Max is not the only one who has gone through this experience. Whilst there is a happy ending for Max with him slowly achieving his goals of being independent, some people do not get the proper support for them.

Working as a support worker is a great job when you see how much of a difference you can make in another person's life and show up for them to show they can trust you.

As with every industry, there are some fantastic people, and some are not. NDIS is not a scheme where there is a lot of money to be made; it is about working with the people who need it the most and helping them wherever possible, like Max, to achieve their goals.

If you would like to share your story like we have about Max or would like to learn more about Uniquely Me Project you can visit our website Break Free Consultancy or contact us

We would love to hear from you

Written by Jacqui Grant

(C) 2024 Break Free Consultancy

Disclaimer: All information is correct at the time of publication, Max's full details have been withheld to ensure his privacy

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