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Fri July, 17th 2020
New research involving the HD community is set to begin after Huntington’s Victoria secured grant funding from the NDIS Information, Linkages and Capacity Building (ILC) program.
The research will aim to take a closer look at the prevalence of HD as well as the number of people receiving funded support including whether the services available match the needs, expectations and goals of community members.
Conducted by a team at Monash University Rehabilitation, Ageing and Independent Living (RAIL) Research Centre, the research will assist in the development of better services and will inform the implementation of a national online peer support service called Huntington’s Community Connect (HCC).
Huntington’s Victoria CEO Tammy Gardner said the grant from the NDIS aims to assist organisations to develop peer support services and empower people with disability. “This is such an exciting development for HV and the community and it relates back to the promises made in 2016 at our community day in relation to the development of a HD registry and a Social Impact Measurement tool” Ms Gardner said.
“Understanding prevalence and gathering information from our community about their needs will help shape how services to the community will be delivered into the future. “The Monash research will be a step closer to gaining a more accurate understanding on what the national prevalence of HD is and the support people are actually receiving. Community members will get a chance to talk about the suitability and effectiveness of the services they access, what they need from peer to peer support, and what they want health and disability professionals to know about the disease.
“The research will help us to continue to grow our support services including HCC, which will be a peer-led online forum and a safe space where all members of the community can come together. People will be able to share information and get support via the forum. Community members will also be able to find information on their rights and develop the skills and confidence to better navigate service systems and achieve their own goals.
“Our hope is that through this grant we will continue to build the resilience and capacity of our community members, which includes having them recognise the power of their voice and the impact of sharing their own story is for the community at large.”
What I’m most excited about, is that this project is being overseen by a steering committee that is led by a majority community representation Ms Gardner said. I am most grateful that these community members have not only agreed to give their invaluable time and expertise to this project, but also see the value in it for the larger community”
Ms Gardner pledged to keep the community informed throughout the project and provide updates on outcomes, and has also encouraged people to get involved.
“Once the team at Monash is ready we will be contacting community members to give them an opportunity to participate and have their say about their services and supports and what they need,” she said. However you can also register your interest in participating, and I urge you to do so. The greater the community input into this project, the more we can ensure that this project and the HCC will meet community need.
If you are interested in participating in this project please have a read and get in touch Expressions of Interest
