Connect and Grow Magazine - Edition 6 February 2024
We have been able to give to many families over Christmas and the holidays; we are looking forward to being able to support others as 2024 progresses!
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 Tara's experience of raising a child who is Autistic, nonverbal and has reduced hearing.
Let me introduce you to Tara and her daughter Maikayla; they call her Mickey as she loves Mickey Mouse.
Maikayla/ Mickey is now 6, and usually, at this age, she would be going to school; however, given that Maikayla has limited hearing and no language development, she only makes a few sounds, including laughing; she cannot attend school.
Tara is raising Maikayla herself as a single parent and without any family around her, as her family disagreed with her raising a child that is so different.
Tara applied for an NDIS plan, and after two years of using and reapplying, she finally got a plan with minimal funding. Tara has had to give up work to care full-time for her daughter, with all the appointments for physiotherapy, some speech appointments and Occupational therapy.
When I met Tara and Mickey, I could see the fatigue that Tara was experiencing and the high energy that Mickey had; she was full of playful energy, and with that energy, she was on the go a lot. Tara shared with me that Mickey only sleeps 4 -6 hours a night, and most of the time, it's only 4 hours; with no one else to assist in taking care of Mickey, Tara feels fatigued and burned out. Tara reached out as they did not get support coordination in Mickey's plan, and she was at a loss as to how to even start with understanding the plan and how to use the funding; the only part she was clear on was that she needed a plan manager. I spent a few hours with them and got to know them a little. We looked at some options for services for Mickey, and they began the process of meet and greets.
Meet and Greets are when a potential provider and the person with the plan and/or their family member meet to decide if they are a match for services.
Tara started to meet different providers and was able to find an Occupational therapist she liked and was good with Mickey, however finding a support worker who was available to work with Mickey 1.5 hours a week as that is all the core funding they received, yet no provider including independent providers were interested, they wanted to charge a minimum of 2 hours of service a week, but there was not enough funding for this.
In the end, Tara decided it was less stressful for her and, eventually, Mickey not to have a support worker, especially since many of the ones she met wanted to charge the maximum rate for service, and none of them had any experience with children with autism, being non-verbal and hyperactive, they also had no understanding of how to communicate with a child who is non-verbal or using a communication board and appeared not to be interested in learning.
As a registered nurse, Tara understands how working in health means you learn to be flexible; she found that the people she met who stated they were keen to work with her and Mickey were not flexible.
Flexibility is an important part. Working with people, especially people with a disability and, where appropriate, their family
Tara has advocated for Mickey to be around other children who are also autistic, to learn social skills where possible and to teach her as much as possible. Both Tara and Mickey have a long road ahead of them, and with the recent news articles stating that children with Autism maybe removed from NDIS, Tara worries about what will happen to Mickey and the support she needs; even with an NDIS plan, finding the right supports has been very hard, and Tara shared with me that she believes it's important for a business who provide services to people with a disability that they are registered and held to a high level of accountability and compliance that is currently not in place, she is also hoping to see that qualifications are required for people especially those working with children.
Tara has been able to make some new friends, and she shared with me how supportive they have been in helping her to get some rest when Mickey is not sleeping. Everyone deserves the opportunity to have a life that is the best it can be, where there is more joy and success than stress and worry.
Tara asked to share hers and Mickey's story to raise awareness that while a support worker may feel they can come into someone's home and expect to be paid for 2 hours when there isn't that funding with no experience and the maximum rate, it is wrong and it creates more stress for the family. Tara shared with me:
" If you approach your job with compassion and listen to the family, the person with the disability, you will be welcome, but if your focus is money, then it may be time for a different job, as it is our everyday life!"
If you would like to share your story like we have about Tara and Mickey 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
Disclaimer: All information is correct at the time of publication.