Connect & Grow Magazine Issue 16: December 2024 - January 2025
On the 15th of December we had the honor of being part of Keeley’s Causes charity day, you can read about it in the front of the magazine, in the feature article. and we took along with us a few bracelets for those to take home.
Why we stopped using NDIS funding – the stress was too much!
Hi everyone, my name is Alice. I am sharing my story through Jacqui's Connect & Grow magazine, a platform that has been instrumental in raising awareness about disability issues; like mine, I love reading the magazine each month. My mother met Jacqui, a strong advocate for disability rights, a couple of years ago when we were looking for a new support coordinator. She has been a guiding light in my journey, and I am grateful for her support of my family and this opportunity to share my story so others may know there is some hope and why my family and I decided not to continue with NDIS.
I am now 18 years old, autistic, non-verbal, and I also had a stroke when I was 2 years old, which left me blind in my right eye, and I walk with a limp; my left arm gets spasms, so it doesn't want to work correctly all the time. I have nocturnal epilepsy, which means I mainly have seizures at night.
When I was 12 years old, my family applied for an NDIS funding plan to help with caring for me, especially overnight, as I tend to have seizures then, and it is exhausting for my parents and my older brother, who have to stay awake overnight in case I need medication. This funding is crucial for our family's wellbeing.
It took the NDIS assessment team 18 months to assess my application for support work, support coordination and allied health services, each important for my safety and wellbeing. Eventually, I received a plan that had 6 hours of support work a week in core funding, 16 hours of support coordination and 20 hours of allied health, I needed a new Occupational Health and Safety assessment along with some intense physiotherapy for my arm and leg as they were becoming hard to move and the regular physio session through enhanced primary care plan was not enough and community physiotherapy declined me due to my disability, they said I should have NDIS funding... which I couldn't get at the time.
None of this was enough. However, we met Jacqui, who explained that the first plan is often light and can be used to obtain additional reports to build a good case for more funding, a bit like a base from which to grow.
Jacqui, my mother and father, and my occupational therapist all worked together to get as many reports and supporting documents together as possible for further support. This included overnight shifts for four nights a week so my family could rest and then be available for me during the day. The intention was for me to be able to build some capacity with a support worker during the day, but I needed them even less as time went by; at least, that was the plan.
My communication is not always easy to understand, and eventually, my parents got me a communication board. I also learnt to type so I can have a voice, just in a different way, but still a voice nonetheless. Given my communication barrier, it was hard to find the right support workers, especially since my core funding in this first plan was NDIA-managed. Jacqui tried hard to change it to at least plan managed, which took until the new plan. The NDIS registered providers that Mum interviewed were really unreliable and not that interested in only 3 days of 2-hour shifts; they kept saying their minimum hours were 3 hours as that's what we have to pay staff; my dad quickly found out that was not accurate when he called fair work. Imagine if I didn't have the parents I do.
My mum joined a support group for parents of young adults who have autism, and she soon learnt that so many people with an NDIS plan found that the support workers, especially the independents, never take the time to set their business up properly. Many didn't have business insurance, and my family found this shocking. My dad is an accountant, and my mother was a teacher of economics, given they both learned that sole traders told them that they don't need service agreements, they don't need to document anything, and they don't need to replace their shifts if they were off sick, left my parents feeling even more stressed than before the NDIS. Over the next 18 months, my parents kept searching for the right people who were correctly set up as a business and who actually wanted to know and support me in a way that met my needs. Even when Jacqui helped us to get 3 active overnight shifts and more support hours during the day, finding the right provider ended up causing my parents more stress. We didn't know what to do; it felt like a constant fight with either NDIS or the providers.
One day, my mother was debriefing with my aunty when they met a lady who did support work and was familiar with my communication device. The lady stopped and spoke to me, and we had a bit of a laugh; she understood me. My aunty asked her if she was looking for work, and she preferred overnight shifts; this was great. That is what my family needed. This lady could show her business set-up; she had an accountant, and my dad was excited about that, someone with a proper business and a nursing background. She had recently completed a seizure course to stay up to date, and my family decided to higher her privately and not use the NDIS funding, which this lady was happy with. They set up an agreement that worked for everyone, and I have Tracey and another worker at night to look after me, and my family can sleep. I also have another support worker during the day, none of which is paid with NDIS funding, as it was all too much for my family. The capacity-building funding didn't help, and we had something to work towards because I got an Occupational therapist to write up a plan for at least 12 months.
I recognise that many individuals are not as fortunate as I am in securing the funds necessary to hire support workers who have established their own thriving businesses and aren't dependent on the NDIS for financial backing. Unfortunately, I've witnessed a troubling trend among my friends and acquaintances in the autism community; several of them, despite being verbal and capable, have recently had their NDIS plans terminated, leaving them without critical support.
My parents frequently hear from other families that their children's funding for essential support services has significantly dwindled compared to just a year ago. The NDIS has made sweeping changes, removing numerous individuals from the program, and it's heartbreaking to see many struggles as a result. Without adequate support, I fear for their ability to cope with the challenges they face.
Moreover, it's concerning to observe that many sole traders providing support services may not possess the necessary qualifications or understanding to support those of us living with disabilities adequately. There seems to be little oversight from the NDIS on the capabilities of these individuals. Many of them lack insight into the complexities of navigating life with autism or the feeling of being trapped in a body that doesn't always respond as desired. They may not grasp the additional burden this places on our families, who often face their frustrations and exhaustion.
It's baffling that some workers expect to be compensated over $60 per hour for their services, often seemingly indifferent while simply occupying space without engaging. I consider myself fortunate that Tracey took the initiative to reach out and connect with us; without her kindness, my parents and I might still be feeling lost and overwhelmed by the challenges we face. If you are a person living with a disability, I hope you continue to receive the support you need. It can be challenging, and it often feels like the NDIS is reluctant to assist. Additionally, many support workers may perceive us as a burden. However, we may not communicate the same way as others, but we still think and have emotions. We encourage you to take the time to get to know us.
Written by Alice
An incredible inspiring person living with a disability
Giving back
As part of our Uniquely Me program, we always give back to the community.
We are giving 5% of our bracelets and coffee mugs sales.
To find the right bracelet for you, visit our store: https://www.breakfreeconsultancy.com/product-page/memory-wrap-bracelets
Coffee Mugs: https://www.breakfreeconsultancy.com/coffee-mugs
If you want to share your story or that of a family member or learn more about the Uniquely Me Project, visit our website, Break Free Consultancy, or contact us.
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Disclaimer: All information is correct at time of publication and subject to change