October is National Dwarfism Awareness Month.
Jade came to us from another assessment agency. She had completed an OT driver assessment and the recommendations were that she needed to explore hand controls because of her functional issues associated with being short of stature.Jade has started her journey to get her license but is in the early stages. She very kindly agreed to tell her story of the process that she has been through up until this point. She talks about the assessment process and working through the NDIS, buying a new car and what it is like to drive with modifications. If you get our What’s new at Williams OT notifications, you would have been seeing Jade’s picture for a while now. Now, you can get to know her a bit better.
For a long time, I always thought about what it was going to be like to try and sort out a car for someone who has dwarfism. There were many times before I got my learner’s permit that I would picture what type of modifications that I would use. It wasn’t until I managed to get my assessment at the hospital, that it was then I was finally able to get some understanding.
When going to my first assessment, I had so many different emotions, I was nervous about the fact I had never actually had the opportunity to drive a car before, but also excited that I was being able to try and figure out opportunities and ways around getting a car so I could now become independent. I looked at both foot extension pedals and hand controls, but I soon was able to discover, with the help of Occupational therapists and other specialists, that it would be best to choose hand controls. Because of my dwarfism, if I sit for too long, my legs eventually get pins and needles followed by numbness which proved for danger on the road.
It has been really good being able to have numerous driving lessons as we have been able to further decide and define my specialized hand controls, indicating the best possible choice for me, making me feel confident that I will be getting the best type of modifications for myself and my short stature.
The National Disability Insurance Scheme is currently being rolled out and we are now able to plan and try to access some funds to put towards modifications, and although we have been approved $4,000, we still need to manage to get another $1,000 to pay for the modifications I need. This is difficult and leaves both myself and the family slightly stressed because we have had to purchase a brand new car so the modifications are more worthwhile. Although it has taken some time and patience, once this process is complete I will be able to be much more independent in reaching my goals and everyday life and routine.
At Williams OT, we have loved working with Jade. And the journey has been interesting. The modifications that she trialed in the instructor/OT’s vehicle were working well for her and her driving was really advancing quickly. Unfortunately, the car that she wanted to purchase did not have the required room to fit the modifications in the correct spot where Jade needed it. Through a visit to the car dealer and to test other modifications in the new vehicle, it was established that Jade would need to move to another style of controls. This did not phase her at all and she continues to move forward through the process of learning to drive with hand controls and obtaining her driver’s license.