Reflecting on Visiting Groote Eylandt, a Remote Aboriginal Community in NT

12 months ago Youngcare representatives, as guests of the Machado-Joseph Foundation, were welcomed to Groote Eylandt, a remote Aboriginal community off the north-east cost of the Northern Territory. The purpose of the trip was to meet with locals, who have the rare-degenerative disorder of Machado-Joseph Disease (MJD), and are often forced to leave their community when their care needs become too high to be managed by their family members.

This educational, eye-opening experience demonstrated the importance of the Aboriginal community, country and culture, and taught us ways that we can better support them to stay in their homes. The research that was undertaken was collected and submitted for the purpose of the Royal Commission into the Quality and Safety of Aged Care.

MJD is a hereditary neuro-degenerative condition which sits within the ‘family’ of neurodegenerative diseases that includes Huntington’s Disease. Each child of a person who carries the defective gene has a 50% chance of developing the disease and the mutation is typically expanded when it is passed to the next generation (known as an ‘anticipation effect) this means that symptoms of the disease appear around 8-10 years earlier and are more severe.

Despite having an aged care centre on the island, lack of skilled staff, appropriate funding and lack of trust in the community mean that it can only operate as a day centre, providing breakfast, socialization and occasional respite.

When an individual’s care needs become too hard for family members to manage, they are forced to fly to Darwin and leave their community behind. In communities where MJD is prevalent and runs through bloodlines, sometimes whole families can be effected and separated.

My people, never wanted to go to Darwin to die. The reason why they wanted to stay and die is because family do not want to go to Darwin when it is too expensive to travel to see them.” – Gayangwa Lalara, elder.

Gayangwa’s father developed MJD when he was an older man, and all 6 of her brothers and sisters were affected by their 40s.  Gayangwa does not have MJD, and uses her time to care for her family and advocate for their needs as the Director / Vice Chairperson of the MJD Foundation.

She was also the primary carer for two of her sisters’ children for over 15 years. Now the third generation of her family is sick – her 21-year-old niece passed away in 2014, and she has nieces, nephews and grandchildren with the disease.

“For us as a family, she was in my care for a long time and then she was missing from us. It wasn’t better for her to go away because there was a building here – but it wasn’t 24/7 for her to stay there. It makes me sad that we can’t use it.”  

“It is better for them to stay and they have more support here in the community instead of going away from home. There they will be sitting or lying down looking at the walls but here there are families that can come and visit them and talk to them.”

News you might like:
2 August 2017 Youngcare explores options as NSW project ends Youngcare’s partnership with St. Vincent’s Australia to deliver high care housing ...
30 August 2016 National not-for-profit organisation Youngcare today announced the appointment of new Chief Executive Officer Anthony Ryan. Mr ...
24 July 2017 A message from our partners at Vincents At VINCENTS one of our core values is to actively build a company environment that contributes ...
8 March 2017 Sylvia Jeffreys joins the Youngcare crusade January not only marked the start to an exciting new year, but the announcement of ...
8 March 2017 Albany Creek update We are thrilled to announce that the Youngcare and MS Queensland Apartments at Albany Creek are on track to be a ...
1 February 2017 Familiar face adds voice to national issue This week, 700,000 young people with high care needs across the country have been given a ...
8 March 2017 CEO message Two months into my new role at Youngcare, it’s fantastic to be writing for my first Y News! There are exciting times ...
The National Disability Insurance Scheme (NDIS) has changed the disability sector forever. For the first time in Australian history, young people with ...
24 July 2017 Out and about International Women’s Day was a great success celebrating women and raising funds for Youngcare. Hosted by the ...
18 July 2017 The Today Show aired Todd and Kat's story 'I never thought I’d find somebody like her': How gaining independence led a young man ...

Are you a young person seeking help?

What we do


Get Help


Contact Us


A huge thanks to our supporters 

Vantage Performance
Vertica Capital
MGD Private
Brisbane Airport
Cutting Edge
Just Photography
Birdsville Social Club
Network First
Hand Heart Pocket
Audio Visual Elements
Spot Productinons
MS Queensland
Clark Real Estate
The Co Group
Motorola Solutions
Hopgood Ganim
Taylor Byrne
Women's Weekly
Select AV
Queensland Government
Bruce Lynton
Braggs Signs
Tatts Group
McCabe Curwood
Care Tech
Flight Centre Foundation
ALS Global
Doug Hall Foundation
Knight Frank
Forte Catering
CV Services
Une Parkinson Foundation
Story Bride Hotel
Birdsville Roadhouse
MMO Interiors
National Storage
LAS logo
J W Bell & Associates
Cakes & Sh!t
De Luca Corp
One Harvest - love beats
Aurora Adventures
Brighton Homes
Collins Food
Channel Nine
Media Merchants
Broncos Charity Fund
Just Cause Bunch
IOR Petroleum
Shine Lawyers
Queensland Rail
Betta Home Living
Eureka Landscaping
Tattersalls Club
Rivergum Homes
Birdsville Hotel
AWIC - Awesome Women In Construction
Canvas Art Factory
Wolff Group
Skip to content