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Transition times during someone’s life can be difficult. Whether it be from high school to university or Tafe, and then to working life after that. For people with disabilities, these times can require extra planning, especially when it comes to getting support in place. For me, the NDIS has made these transition times a lot easier.
My name is Amy and I’m from Perth. I’ve been an NDIS participant (self-managed) since its rollout in 2015. I have a neuromuscular condition called Nemaline Myopathy, which means I use a wheelchair as well as a ventilator. I have support 24/7. A year ago, I graduated from university with a Bachelor of Commerce, majoring in marketing and advertising and I now run my own business, Little Black Dress Digital.
Little Black Dress Digital is a digital marketing company offering social media, email/newsletter and website content services. I’m also super passionate about accessibility in the digital space, as I know what it feels like to turn up somewhere and for it not to be accessible for my wheelchair. As the digital space is a great way to connect with others, making everyone feel welcome and included, I want to ensure the content is accessible.
For me, the NDIS came at the perfect time, as I graduated from high school at the end of 2015. This meant a lot of changes for me including more support hours, a new wheelchair and a modified car as I transitioned to Tafe (I completed a Certificate IV in Residential Building Drafting before completing my Bachelor’s degree). It was also a time when I wanted to rely less on the family unit for support and become more independent, just as every 18-year-old goes through.
Prior to the NDIS there were few “after school” support programs/plans to choose from and none nearly as flexible as the NDIS. Having a rare condition means that my needs are very different to other people using those programs. While I need 24/7-hour support, I just need someone to be my arms and legs, as I like to say. Thanks to the flexibility of the NDIS and the help of my support workers, I have been able to go to Tafe, then university and finally, working life.
I was also able to go out with friends without having Mum tag along, which isn’t so cool when you become an adult! This gave me a sense of independence. My social life grew (haha mostly because I had time to go out now – high school was all about studying for me) and now I have a great work/life balance, going out most weekends with support workers and friends.
These days, weekends to me mean attending the races. I own shares in several racehorses and enjoy getting out to the track to cheer them on. The racing community is like my second family, and I love celebrating my wins with them. At the races you’ll also occasionally find me competing in ‘Fashions On The Field’ (FOTF). ‘Fashions On The Field’ really brought together my two loves of horse racing and fashion which is evident through my Instagram page I’ve been lucky enough to be in the WA FOTF Final in 2020 as well as place in the top 10 for Myer Fashions On Your Front Lawn for WA, with this outfit getting featured in Vogue.
At the races and on weekends, you’ll also find me creating content for Instagram. In the past 12 months I have gained a large following, using this platform to break down disability stereotypes, particularly those in the fashion industry. Just like any other Gen Z, I also enjoy using social media to connect with likeminded people. As I grew as a person and my interests, passions and focus in life changed, my providers also had to change with me. With the NDIS I could choose who I wanted as my providers, resulting in more flexibility and the option to choose from a wide variety of providers and people (the flexibility of the NDIS gives me choice, control and independence). The NDIS meant that providers had to change their business model. Not only that, but they now had to see me, their client, from a new perspective. I’ve been with many of my providers for as long as I can remember and now as an adult, capable of making my own decisions, things have to be run by me, instead of my parents. The support I access through the NDIS means that I’m able to do what I want in life, including running my own business and attending the races!
You can follow Amy on Instagram (@amy_c_evans) or learn more about her business, Little Black Dress Digital, via its website www.lbddigital.com.au