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  • Writer's pictureJacqui Grant

Uniquely Me - Empowering you!

Connect and Grow Magazine - Edition 7 - March 2024



As we give to others, we are excited to share that we will be launching our T-shirt and hoodie range very soon. Keep an eye out on our website and the magazine.

 

This Month, we are introducing you to Michael and Lauren.

 

 

Michael and Lauren are two incredible people who have three children with disabilities.

 

They shared their story with me so that other people could learn from their experiences.

 

Their children are: 10-year-old twins Michelle and Ebony, who are both nonverbal autistic, hearing impaired and Peter, who is 8 – Down syndrome.

This is their story, as well as the challenges they face as a family with very little support outside their family and Michael’s sister.

 

Michael and Lauren, with their three children, live in Victoria; we are not disclosing their actual location for their privacy. When they moved to Victoria from Queensland, they left behind friends and a network of people who welcomed their family. They had not applied for NDIS at the time as Michael’s job moved them, so they felt it best to wait.

 

Arriving in Victoria, they found themselves a home. However, for their three children, this change was huge. None of the children coped with the move and being away from their network. They both knew that they had to get additional support to help with the children, as Michael had to go to work, and Lauren was not able to cope alone with three children, all of whom had medical conditions as well as disabilities.

 

Once approved for NDIS, they shared with me that was the easiest part, it was what occurred next that they are still upset with, even 2 years afterwards. As Lauren describes it they relive the trauma of what some support workers and support coordinators put them through; the broken promises and the sheer misuse of their children s funding stays with them.

 

Each child was granted decent funding plans, and they decided to be plan-managed as it was too much to do the budget, be there for the children, attend all the appointments, and meet new people.

 

Lauren shared with me the following experience:

“When I received the three NDIS plans, it was like a gift; Michael and I felt relieved that we would have some support.

We asked around in the Facebook groups and were inundated with messages from people offering their services. We decided to go with independents as we felt they would provide more personalised services, but we were wrong.

 

The first support coordinator informed me that she had over 4 years of experience as a support coordinator and would be able to assist us in navigating the system, it turned out to be 4 years altogether, including being a support worker and NO experience as a support coordinator, she gave us the incorrect information each call and our support coordination funds that were to last 2 years for each child was gone within 6 – 8 months, she invoiced each child, and time she called me even though the call was about only one child, stating it’s okay that’s how to support coordination is. She didn’t know what an S100 was, nor did she know anything about the NDIS code of conduct or have any documents in place for us to complete; when we ended services, she informed us she was going to report us to the commission for overspend, however at this point, the only funding gone from our children’s plans was what she invoiced.

 

There was no service agreement and minimal communication with her for most of the 6 months we attempted to implement our children’s plans.

 

Eventually, I found on my own three independent support workers, one for each child, as we had the funding, and it is important to us that each child has their own support and independence.

 

The first support worker we onboarded told us she could use sign language; however, she only said that to get the job, so we had to start again.

 

Eventually, we got three support workers that suited our children. The girls were happy and responding well, but over time, we noticed that the support workers were not following our instructions, especially for the girls. They would often not show up for a shift and have organised for the other to cover both shifts, yet both invoiced us, one who invoiced for the two girls for the one shift and the other stating we cancelled at short notice.

 

When we asked them about the invoices, they both seemed to think we had made the error. When we declined to pay the invoices as they had submitted them, they lodged a complaint with the commission against us.

 

Michael had been keeping notes, and we had also noted that they would both often be late bringing the girls home from the social and community sessions, which started to impact our funding for the girls. Whilst we had a plan manager who was incredible and great support to use, I did do a budget, and as the invoices rolled in, with them creeping up to be more and more, we became concerned.

 


Eventually, we got to the commission's call, and Michael and I were more than happy to sit with them and report what we had noticed. Both support workers had even attempted to take the girls on a STA, telling us that NDIS would pay for this retreat they had set up together and that it is important that the girls go every weekend for a month.

 

While core funding is flexible, it is important to do the budget because the girls were not funded for STA at all, and they did not want to go on a retreat.

 

When meeting with a representative from the NDIS commission, we were informed that there are a lot of independent and small businesses telling people they can have STA attend a retreat, and they plan on investigating this further. We were one of the lucky ones in that we knew our children did not have funding for certain things.

 

Michael and I ended up choosing to go with a small company that has NDIS registration and who actually had an interest in our children, especially the girls. The two support workers we had for the girls have now been banned from working in NDIS because they had managed to drain other people’s plans by getting people to go to their retreat and overcharging. FYI, the retreat was only 2 nights in an air bnb near a beach and one, maybe two people to 6 people with a disability; they had children and adults together, and they charged as if it was 1:1

 

It was a tough time for us as they both seemed great and cared for the girls, and both girls started to respond to them.

 

Now that we have found the smaller company, the girls are excelling; they are achieving things that we didn’t think they would, and they are starting to work with a speech therapist for some assistance to see if we can help them develop some communication skills outside of sign language. Our son has always done well, and his male support worker has been incredible, so yes, there are some great independent support workers. However, it takes a lot of work to find them.

 

The two who attempted to drain our children’s plans had no paperwork; we were informed that they didn’t have any risk assessments or incident forms and no writing down the information we provided about our children.

 

Our children’s safety is important to us as it is to any parent, and it took its toll on us to be constantly on guard and worried. Our girls couldn’t tell us what was happening,, so we did have to trust these two women.

 

We are grateful to our plan manager; they are great; they informed us each time the invoices came in, and we got to discuss them, which is how we knew there was a problem with the invoicing. It was subtle changes that could have easily been missed.”

 

When I asked Lauren and Michael if they had any tips for other parents looking for support workers or even messages for those working in the industry, their response was:

 

“Parents always do the budget and work with the plan manager to ensure it is right, that the invoices are correct, and to trust themselves. For service providers, please remember you are in a position of trust, so do NOT abuse that trust. The funding is there to help the people who actually need it, not to pay for your lifestyle!”—Michael.

 

As other people with a disability have shared, some incredible and amazing service providers do care about the people they work with; however, when someone is taken advantage of and trust is abused, it can have a deep impact on that person.

 

Having a system that calls for accountability and ensuring that people with a disability are treated with respect and dignity as the person/people they are is so important.

 

  

If you would like to share your story like we have about Michael, Lauren and family or would like to learn more about the 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 - Connect and Grow Magazine

 

Disclaimer: This article is the family's story; we have kept many details vague for their privacy; it is shared as they have shared it.

 

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