The power of choice

Posted on Friday, September 17, 2021

When faced with a challenge, Kylie Mucciarone is the kind of person who asks herself, “How do I make this happen?”

But in 2018, making things happen seemed to be beyond even Kylie’s powers of determination.

The treatment for her medical condition was no longer working and she reluctantly gave up her corporate career to focus full-time on maintaining her health. It was an enormous change for Kylie, a private person who had managed her condition without fuss most of her life. Even today, she prefers not to label herself, describing her condition only as chronic.

“I had a bit of a reality check in 2018 in terms of what I could now achieve because my disability up until then had been mainly invisible and I had enjoyed a level of control. Once my condition became more apparent to the outside world, I didn’t have that anymore. I quickly realised the power of choice. The choices I made from this moment on would impact my future journey. So I could choose to become a victim to my circumstances or I could choose to look for new opportunities,” said Kylie.

Kylie chose the latter, which led her into an NDIS (National Disability Insurance Scheme) package and a partnership with Brightwater through the Capacity Building Program.

“Aligning myself with people who understand the NDIS and what can and can’t be done, has been paramount for me. It has been responsible for improving my quality of life, so that I can live as safely and independently as possible. I’m so grateful for that.” 

Brightwater is a recognised leader in providing services through the NDIS, working with clients to maximise the benefits of their individual plan and collaborating with a range of providers to ensure clients achieve their goals. The Capacity Building Program provides services to people with a disability who are either living in their own home or in supported living. The program is tailored to each person and flexible to meet changing needs.

Thanks to the program, Kylie has been able to find her new normal, a term she is not a huge fan of. Not including her family, whom she would be lost without, Kylie has a team of around 15 people supporting her.

“They say it takes a village and really does. At the moment through Brightwater, I work with a support coordinator as well as a physiotherapist and two occupational therapists. My team also includes a counsellor, nurse, dietitian, speech therapist, social support and domestic services, who are sourced through various providers.”

Brightwater Physiotherapist Chelsea Parnell is part of the team.

“I’ve been working with Kylie for little under a year now and she continues to surprise me with her determination and desire to always strive for improvements in her function and mobility. Kylie is the dream physiotherapy client as she is always willing to give an exercise a go and do what is required in order to achieve her personal goals. Not to mention she always makes you feel welcomed and at home - as she says we are her extended family, which always makes the job that much better!” Chelsea exclaimed.

“My team are my extended family; we celebrate special occasions together and are constantly in touch. I affectionately refer to them as my ‘Aloha’ family - a term I learned to appreciate during my travelling days to Hawaii. My team don’t only support me, they lift me up and we always have a good laugh,” said Kylie.

The level of support that Kylie receives now means she can also focus on one of her NDIS goals of participating in the community through volunteering opportunities and other programs. This provides her with a sense of purpose, elevating her happiness and fulfilment.

“I’m quite excited because I’ve recently been afforded a role with the National Disability Services Ready to Go Home project. I’m on a panel with other ‘frequent flyers’ in the health care system with the goal of improving the ‘hospital to home’ transition for others based on our experiences, both good and bad.”

There are still days when Kylie admits that she “feels a little broken” but she’s getting better at using the tools, techniques and support available to her so she can still make positive things happen, however big or small.

“Having a chronic condition makes my life very unpredictable and challenging, however it also inspires me to be the best that I can be in those moments of uncertainty. I’m so grateful to be working closely with my Aloha family to maintain my health and finding the fun in the things we need to do along the way.”