Call out to families on World Sight Day

03/10/14
RIDBC is urging families to sign up to the vision impairment register on World Sight Day

On World Sight Day, Thursday 9 October, Royal Institute for Deaf and Blind Children (RIDBC) is calling on families of children with a diagnosed vision loss to join Australia’s Childhood Vision Impairment Register.

An initiative of RIDBC, the register aims to identify the total number of children living with significant vision loss in Australia. This is giving Australian service providers the information they need to plan for future service delivery and greatly improve the life outcomes for children, and their families.

Developed by RIDBC in partnership with families, teachers, health professionals and low-vision service providers across Australia such as Vision Australia, Guide Dogs, Cando4kids and Senses Australia, more than 950 children are now registered - but there’s still a long way to go. 

“Australia is really lagging behind the rest of the developed world in capturing the incidence of vision loss.  It is disappointing that in 2014 we do not know how many children in Australia are living with vision loss,” said Sue Silveira, Senior Research Fellow at RIDBC Renwick Centre and Project Manager for the Register.

“A clearer image of the effect of vision impairment on Australia’s children gives us a much better way to predict their service requirements.”

The Register seeks to determine the most common conditions that cause vision loss and also to establish an information network for parents. More than 70 different diagnoses of eye and vision problems have now been identified, with Cortical Vision Impairment the most common.

“There is a website and forum for parents to find information and to contact other parents who have similar experiences. No-one knows what it’s like to raise a child with vision loss except parents of a child with vision loss. Those parents need to have the opportunity to support each other,” Ms Silveira said.

With the right support from an early age, children like Sydney’s Jacob Butler, can go on to reach their full potential. Jacob was diagnosed with aniridia at 11 weeks of age, a condition that affects the formation of the eye. Now, fortnightly home visits from RIDBC are helping Jacob progress by reinforcing his visual skills.

“We had never heard of aniridia,” said Jacob’s mother, Lesleigh. “There is a real spectrum within the condition that creates a lot of uncertainty. On diagnosis, our ophthalmologist referred us to RIDBC and told us they would be our most important resource – he was right.”

Within weeks Jacob was receiving home visits from staff at RIDBC Early Learning Program. 

“I was so impressed at the speed it was all done,” said Lesleigh. “Jacob is now two years old and through RIDBC we have a dedicated consultant and an individualised program. RIDBC is introducing Jacob to play-based activities that not only stimulate but challenge, his functional vision.

“RIDBC provides all the resources and materials needed to assist in his learning. Before you have a child with vision loss you don’t how isolating it can be. RIDBC has taken that sense of isolation away.”

The Register has the approval of the Hunter New England Human Research and Ethics Committee.

Those seeking to register their child can do so via http://www.vifamilynetwork.org.au

RIDBC is Australia’s largest non-government provider of therapy, education and diagnostic services for people with hearing or vision loss, supporting thousands of adults, children and their families, each year.

RIDBC relies heavily on fundraising and community support to be able to continue to make a difference in children's lives.  In order to maintain its intensive educational and research programs, the organisation needs to raise approximately $2.5 million every month.