The Importance of Assistive Tools to Live Independently
Jamie-Lee details the challenging experience she had getting the assistive tools she needs to live well.
Assistance tools and home modifications often play a large role in the everyday lives of people with disability to remain living independently – this is certainly true for me.
However, I recently experienced life without these assistance tools, and that came with a direct negative impact on my health.
Earlier this year, I made the move from my Specialist Disability Accommodation (SDA) apartment in Brisbane to the Gold Coast so I could be closer to family. While this was an exciting time for me, I had to live without a ceiling hoist for almost five months, and I experienced conditional decline because of this.
Jamie-Lee in her standing frame.
I was trying to save my funding, so I organised for my ceiling hoist in Brisbane to be moved to the new SDA property. This decision ended up costing a lot more than I was initially quoted due to a variety of factors, delays and miscommunications. The hoist was initially expected to be installed the same the week of my move, no more than three weeks. This blew out to 20 weeks.
During this time, I started using a floor hoist, but it made transfers a lot harder and I needed two people to help me, which used a lot of my NDIS funding. My occupational therapist (OT) and support coordinator were constantly calling and emailing the company on my behalf, and when I received an email from the company, I was able to ask them directly for an updated time frame. After a few months went by, I was contacted by them to say I needed to pay more from my NDIS funding to store the hoist until they could contract someone to install it, which was never discussed prior.
My parents are my greatest advocates, and it was only through the sheer persistence of my dad hounding them that they actually installed it. However, after the first day, they never showed up the following day to finish the installation. This caused even more frustration and stress. Relief was only felt when it was finally installed three days later.
This situation impacted not only my funding, but my health. In hindsight, I would have been better off in all areas if I got a ceiling hoist directly from my new housing provider.
Before the move, I was using a standing frame daily for one hour to maintain my weight-bearing skills. No other piece of equipment can assist me into the frame, so without the ceiling hoist, I lost the ability to stand upright and weight-bear. As a result, I got weaker and more fatigued, lost my voice and I ended up in hospital with aspirated pneumonia.
According to Jesse Shaw, D.O., associate professor of sports medicine at the University of Western States, “It usually takes between three and four weeks to start noticing a decrease in strength performance with a complete cessation of activity.” This situation caused me and my family so much stress and my mental health declined.
I’m now back to standing one hour a day, but I’m still struggling to regain strength and weight-bear.
It has had a huge impact on my well-being. I never realised how crucial standing up was for maintaining my condition and the importance of NDIS-funded and assistive technology and tools.
What I would do differently
This experience has given me valuable insight if something similar happens in the future, and hindsight has allowed me to see what I could have done differently.
I wish I initially outlined how important the ceiling hoist was to my well-being, as I feel like the installers just didn’t understand and need more education surrounding this. I just didn’t think I needed to explain this to the company.
I would have also asked for a written contract from the installers outlining how long it would take to install the hoist and any extra fees.
I wish I rang the National Disability Insurance Agency (NDIA) and complained about the service I received, as I feel like I was being taken advantage of and was not listened to.
I encourage anyone else who may feel like they are being taken advantage of by a service provider to reach out to the NDIA.
Self-advocacy and advocacy from my loved ones and support network would remain the same if this were to happen again, as they helped me achieve the home and living standard I needed. To help get some advice and help, I also reached out to the Housing Hub service. Even though it took a lot longer than expected, this network made me feel less alone and helped me problem-solve this stressful issue. You can find information about advocacy here.
For more specific guidance on assistive tools, or further information if you’re experiencing a similar issue, you can also reach out to the Housing Hub Home and Living Support Coordination team here.
Browse Resources
Housing Seeker Profile
Creating a Housing Seeker Profile is a simple process which involves telling us what you are looking for and what is important to you.
Housing Roadmap
The Housing Hub has worked alongside people with disability to map out the stages of a housing journey and the information you need to know about when moving through each step.
Living More Independently
The Housing Hub has teamed up with Mable to create a three-part series about living more independently.