These days, Ed Smith isn’t moving or talking the way he used to.
The former community health worker and disc jockey now uses a wheelchair, his muscles and limbs no longer do what he asks, and he finds it increasingly difficult to communicate his thoughts to the people around him.
But Ed, who lives with Huntington’s disease, is still the man he always was – strong, determined and passionate about family, friends and community.
He still loves going to the pub on Friday nights and he still loves grooving to his favourite R&B sounds, especially Eminem.
Ed is well known in the small town of Kununurra in far north Western Australia on the rugged eastern fringe of the Kimberley.
Affectionately known as Pluto, he is busy achieving his life goals and dreams, and doing the things he has always enjoyed, with support from the NDIS.
This week, Ed took part in NAIDOC celebrations, marching with his community and dancing in a traditional corroboree, despite 39-degree heat.
Ed says for him, NAIDOC is ‘a celebration of his culture, land, people, past, present—everything.’
“I enjoyed it because it reminds me of our past,” said Ed, 34, a Kalamburu man who moved to Kununurra four years ago to access services to help him live with Huntington’s, a progressive neurodegenerative disorder.
“I’ve been attending NAIDOC all through the years and it makes me feel connected to my culture.”
Ed took part in NAIDOC celebrations with help from registered NDIS provider Far North Community Services and support workers, who help Ed access the community and achieve his goals, funded through his NDIS plan.
“Ed gets to choose who his providers are,” said Tegan Parker, Ed’s Far North Support Coordinator who helps him to manage his plan and access supports.
“Ed is the one who chooses who he wants. I inform him who his options are and he takes the lead, he is always the boss.”
Ed’s plan includes Supported Independent Living (SIL) funding, which means he can live in his own home with 24/7 support. His plan also provides speech, occupational and physical therapies, as well as several assistive technologies, including a new wheelchair, a custom bed, and modifications to his home to make it wheelchair accessible.
Ed says his life has improved in many ways since joining the NDIS three years ago. He likes having choice about who and how people help him to live independently.
“It feels good to have the choice, I like to be listened to,” he said.
Last month, Ed achieved two of his long-held dreams in one magical day—to fly in a helicopter and to see the top of Thegoowiyeng or Kelly’s Knob, the highest peak in Kununurra and a dreaming place of the night pigeon.
“I really enjoyed it, I wasn’t nervous at all,” said Ed, who is still smiling weeks later.
Far North Community Services coordinated a team of people, who joined forces to help realise Ed’s dreams. Communications carrier CipherTel funded the flight with HeliSpirit, and everyone worked together to make it happen.
“It was a huge combined effort from a lot of people to achieve this goal but it was well worth it to see that big smile on Ed’s face,” said Far North Disability Services Manager Yvonne Benson.
“It was absolutely amazing and quite emotional, we had a few tears. The fact that Ed actually got on the helicopter and achieved that, it was one special moment.”