Team work helps Jake be heard

When asked to describe himself in three words, Jacob Vance would say he’s intelligent, habitual and reserved.

Though ‘reserved’ may not be the word that those who work with and care for Jake would use, with many saying he’s an outgoing, social “chatterbox” who loves to have a laugh.

Jake has a rare neurodegenerative disorder that has had a profound impact on his movement, sight and speech. Since moving to Western Australia from Darwin in 2019, Jake has been working with a multidisciplinary team at Therapy Focus to ensure he can maintain his independence and achieve his goals.

“Losing my sight has been really hard for me. Losing all of my abilities has been hard, as I can’t do anything for myself anymore, which means I need 24/7 care,” Jake said.

“My number one goal is to get a communication device because I know I’m losing my voice. It’s getting worse and I want to be able to continue to speak.”

Senior Assistive Technology Consultant, Carla Berlingeri has been working with Jake to find a communication device that he can physically access and will ensure he continues to have a voice. Carla works within the Communication Matters Consultancy at Therapy Focus and has extensive experience supporting people with movement challenges and complex communication needs.

“Because Jake has limited movement and minimal functional vision, we need to find a system that he can independently access,” Carla said.

“We’ve been trialling alternate access using head switches that are mounted to his wheelchair. These switches allow Jake to control a cursor on the screen of the communication device.”

“This is all well and good for someone who can see the cursor on the screen, but as Jake has limited vision, we also need the device to read out the words the cursor is hovering over so that Jake knows which words he is selecting. This is called auditory prompting.”

“Jake has also played a key role in designing the layout of his device, wanting a keyboard in the same format as his old mobile phone – think O.G Nokia 3310!”

Throughout the trialling process, Carla has been working closely with Senior Speech Pathologist, Clare Belford to select the appropriate vocabulary to use in programming the device.

And while Carla and Clare work to find the right communication device for Jake, Senior Physiotherapist Ellie Hawkes has been supporting Jake to maintain his strength and movement through regular exercises and hydrotherapy sessions. Ellie has also sourced Jake a new wheelchair and other equipment through NDIS funding.

“My team is awesome and Carla is a top chick. She gets all my movie and TV references and likes similar music to me, which is pretty cool,” Jake said.

“I can talk to her, and she understands me well. She has taken the time to really listen to me.”

It’s been a team effort when it comes to Jake’s therapy services. And it’s this team effort that will ensure he can keep doing the things he loves in life, like camping, going to concerts, and weekly Dungeons and Dragons sessions.