West Australian NDIS participant Amber never thought she would be able to work, let alone be employed as a National Disability Insurance Agency (NDIA) planner, doing meaningful and rewarding work supporting others with disability.
Amber, 24, has Ehlers-Danlos syndrome – a connective tissue disorder making her overly flexible. It means her joints dislocate easily, but it wasn’t picked up until she was 14.
‘I’m the youngest of 5. I have 4 brothers, so growing up it was very rough and tumble. I always had injuries, and they would just say, “You’ll be right,”’ she said with a laugh.
‘I was always sick, because I was immunocompromised. When I got a little bit older, doctors figured out what was actually going on.’
It was while Amber was attending Perth’s Children’s Hospital for therapy to manage her pain and help with her mobility she heard about the NDIS.
‘I was about 16 or 17 when an occupational therapist (OT) mentioned there was a new amazing scheme starting up for people with disability, called the NDIS,’ she said.
‘I remember going to the Midland trial site. A staff member gave me an application form and said to me, “If you have any friends with disabilities get them to come in. Get everyone you know,” Amber laughed. ‘It was so funny.’
In Amber’s first plan she received funding for a custom-fitted wheelchair, a support worker and regular physiotherapy.
‘When I got a support worker I was able to start doing things. It helped to build my capacity. I started thinking about going to university and I was able to go because I had someone to help me. It was really awesome. It was life changing,’ she said.
Because Amber was able to do more, her OT offered her a job working at a centre where people could come in and test disability aids and equipment without being charged.
‘They could bring their OT, or just come in and have a look at the equipment,’ she said.
‘I worked there as the person with lived experience. It was a great stepping stone for me. I had no work experience until then, and it was hard breaking into the job market.
While working for her OT Amber saw a job advertised for an NDIA participant support officer (PSO). ‘I thought, I’d love to work for the NDIA, so I jumped at the chance.’
Successful in her application, Amber started working. She found she was able to understand and empathise with participants and their situations but felt she could contribute more, so she moved on from her PSO role to become a planner.
‘My lived experience is so helpful. I don’t do face-to-face plans; I do a lot of phone calls. Being a planner is a great role. You’re improving lives and making a difference,’ she said.
Proud to be an NDIA employee, Amber credits her success to her NDIS supports and an inclusive workplace.
‘Without these supports, I genuinely believe outcomes for me would have been bleak. I don't think I would have ever been able to get a job, let alone work 4 days a week, play wheelchair sports and maintain a home. I’m a bit proud of myself,’ she said smiling.
Workplace adjustments have also been key to Amber’s success.
‘Being able to have open conversations with my team leaders to explain my situation has been great,’ she said. ‘Also, having my workstation and workplace adjusted, and the ability to work a 4-day week from the office or home, have just been great.
‘When I first started, I was only able to work 3 days a week, but after about 6 months I was able to increase to 4 days a week, which I never thought I would be able to do!
‘I am part-time, I work from the office one day a week and from home the other 3. I have Fridays off, so I can go to all my appointments.
‘It has worked out well. I still get to see everyone and connect in person,’ she said.