Voice Of Retinitis Pigmentosa Australia

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Voice Of Retinitis Pigmentosa Australia At VORPA we advocate for sufferers of Retinitis Pigmentosa.

18/11/2024

On this page: What is the school education system resp

24/03/2024

The Fourth biennial National Virtual Disability Conference will be held on Wednesday 25th September 2024.

The Conference theme is ‘New Frontiers’.

Save the date. More information and a call for papers coming soon.

Enquiries to nvd-conference@unimelb.edu.au

21/03/2024

Right now, only 1 in 2 people with disability have access to independent disability advocacy support. The Australian government must significantly increase funding for independent disability advocacy organisations to support people with disability. Disability advocates are a crucial part of the disa...

20/02/2024

NDIS Quality and Safeguards Commissioner Tracy Mackey this week attended the launch of a new book that highlights the importance of quality of life, rights and lived experience in disability service design and delivery.

'Disability Practice: Safeguarding Quality Service Delivery' was co-authored by Professor Christine Bigby and Alan Hough, with the foreword written by Commissioner Mackey. The book brings together real-life case studies, current research and ideas from 13 of Australia's leading disability researchers.

Follow the link to read more about the book launch and access the book for free: https://www.ndiscommission.gov.au/media-centre/new-book-highlights-importance-quality-life-rights-and-lived-experience-disability

14/02/2024

We are excited to announce we have developed a set of Conversation Cards as part of our Your Service, Your Rights project.

They will help people learn about their rights and talk about what's important to them when using NDIS services.

There are four types of cards: scenario, rights, questions and true or false.

We are also currently getting them translated into 10 community languages!

Find out more information and download the cards here:
www.inclusionaustralia.org.au/resource/your-service-your-rights-conversation-cards/

Read more about the Your Service Your Rights project here: www.inclusionaustralia.org.au/project/your-service-your-rights/

11/02/2024

ORIENTATION & MOBILITY: ACKNOWLEDGING LOW VISION AWARENESS MONTH

Forward Steps Mobility would like to acknowledge 'Low Vision Awareness Month', especially as a Gold Coast based provider of specialised blindness and low vision services - namely, Orientation & Mobility (O&M), as well as community supports. The photographic simulation in this post represents an eye condition known as Retinitis Pigmentosa, or, RP. Orientation & Mobility is an empowering service for people with RP, who usually experience night blindness in the absence of retinal rods, necessary for functioning at night or low lighting situations. The most common form of RP is a tunnel vision affect, consequently impacting peripheral vision. As such, people with small amounts of residual central vision experience a number of functional aspects around their independent mobility. These can include bumping into people and/ or objects, or experiencing near collisional misses; tripping on unexpected ground surface protrusions; misjudging or not distinguishing drop-off edges, especially with steps; delays with light and dark adaptation around transitional lighting variations, and; becoming disoriented, even in known environments. Forward Steps Mobility has been honoured to provide a number of people with O&M services, who experience RP. This has included a variety of training aspects, such as long (white) cane training; public transport travel; travel route establishment; pre-requisite dog guide preparations; orientation strategies; human guide technique approaches; independent indoor travel skills; et cetera. It should also be mentioned that some people with RP also experience light perception only, and in some instance, no light perception. RP is a genetically based condition, often affecting multiple generations. In some instances, people may also experience a dual-sensory loss, which also affects their hearing. This condition is known as Usher Syndrome. People with RP can sometimes feel like a fraud, due to their ability to function with some useful navigable vision, as well as sitting down to read a book with small font. In the publics' eye, this can seem a questionable presentation in view of the person reading also holding a white cane, or having a dog guide. (Although public misperceptions should be scrutinised around their lack of insight into what constitutes the need for a cane or a dog - humans are unfortunately judgmental by nature). This is a point of sensitivity towards each individual, with the underpinning point being around their safety. Self-determination certainly comes into play around cane or no cane, dog guide or no dog guide. The O&M Specialist's role is to assist each person around making an informed decision, with a supportive and empathetical approach. To all of the individuals out there with RP - keep up the good walk!! 🙂

Kim Pilic 30+ Years' Experience
Independent Orientation & Mobility Specialist
+ Specialised Disability Supports
Forward Steps Mobility - Gold Coast Based
Servicing Gold Coast, Tweed Heads & Scenic Rim Regions
Contact Kim Pilic on 0490 044 344, or kimpilic@forwardstepsmobility.com.au

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