Brief Historical Note

DeafBlind Association [DBA(NSW)] was originally established by hearing/sighted people with the specific intent of empowering Deafblind people. Today it is run by people who are Deafblind and hearing/sighted people act only as Associate members. The constitution calls for at least two thirds of the management committee to be Deafblind. The Secretary and Treasurer (both of whom are deafblind) regularly use the DBA office computers to manage association records.

Historically, people who were deafblind in NSW had received limited service from either the Royal Blind Society (RBS) or the Deaf Society (DS), with each continually referring people back to the other. In 1989, two women, Janett Milligan from RBS and Paula Crean from DS, realised that Deafblind people were ‘falling through the cracks’. Paula with support from Steve Ripley, then working for the DS, investigated deafblindness overseas.

Ten years before, an accommodation service had been set up. Forsight Foundation for Deaf & Blind Adults, created to house people leaving from school at the Royal Institute for Deaf & Blind Children (RIDBC)at North Rocks. The service could not take all school leavers, nor were they employing staff who used sign language, and so people were(at that time) losing communication opportunities and skills.

In 1989 Hornsby Challenge (an intellectual disability service) was asked by RIDBC, to take a young woman into their organisation. Janne Bidenko was to be the person making this decision, and immediately looked to RBS and DS to involve the woman in appropriate activities where she could communicate with other Deafblind people. Janne was told nothing existed and was invited to join RBS & DS starting a social group for Deafblind people to address this void. Initially the group was run very much along “service delivery” lines, according to RBS and DS guidelines, and met at the DS in Stanmore.

In late 1991, after Paula and Janet had moved on to other organisations, Trish James, a blind woman from RBS and Peter Mulham, a deaf man from DS, came to represent their organisations. After that the culture changed to a self-determining club for Deafblind people. The Deafblind members chose the name “Hand Over Hand Club”, and a newsletter was started to give information about outings and articles of interest etc. Members chose to name the newsletter “Rainbow News” and it now goes out in large print (of different sizes), Braille, audio-tape and email. Today (as then) HOH Club meets the last Saturday of each month.

Early in 1991 the first Australian DeafBlind Conference was held in Adelaide and Paula Crean attended on behalf of DS, but it was very much a service Organisation oriented event. In 1993 the 2nd DeafBlind Conference was held in Melbourne, still with accent on services rather than Deafblind people themselves. In 1995 Sydney hosted the 3rd National DB Conference at RBS, which now gave some support for HOH and DBA, recognising them as a separate organisation. At this conference more emphasis was placed on Deafblind people, and linked computers were set up with accessible software, so that Deafblind people could follow the proceedings. This was followed up with submissions to the then Ageing and Disability Department (ADD) for funding for a DeafBlind Service. DBA had been told that the Government would not fund another service, but would consider funding it through a larger service. For twelve months DBA worked with RBS and a representative from ADD, the submission went in, in 1996. At the same time DBA worked on their Constitution in order to become incorporated, feeling sure that funding would become available in 1997.

In January 1997 Trish James was awarded a Churchill Fellowship to study the Professional Course at the Helen Keller National Centre, on Long Island, New York. Trish and Janne traveled throughout February, visiting all the major Deafblind centres across USA and to Toronto Canada, gaining knowledge and information for the new service. It was not to be, DBA was given some money for equipment, but no ongoing funding for a service.

DBA(NSW) became incorporated on the 26th May, 1997, it had needed consent from Victoria to use the name DeafBlind Association, which fortunately was given as it had been used unofficially for some time. DeafBlind Association had been set up in Victoria in 1969, as an accommodation service for both children and adults, so there was some question about NSW being able to use this name. DBA then prepared for the first DeafBlind Awareness Week, celebrated throughout the world in the last week of June, to coincide with the anniversary of Helen Keller’s birthday. This is an ongoing annual event.

1998 saw the 4th National DB Conference in Melbourne and 2000 the 5th National DB Conference in Freemantle, both attended by many Deafblind people from NSW. In 2002 DBA(NSW) hosted the 6th National DB Conference. this was a conference largely organised by Deafblind people themselves. DBA(NSW) had come of age as an organisation run by Deafblind people. DeafBlind members continued meeting with the Government Dept. of Ageing, Disability and Home Care (DADHC), seeking funding for a Deafblind Service. This was finally achieved in 2002, when a submission from DBA(NSW) gained a small amount of recurrent funding from a combined DADHC and Dept. of Housing initiative, ostensibly to achieve cluster housing for Deafblind people to live in close proximity, where they could support each other as well as having some HACC support and interpreters. DADHC sent out tenders to 4 Sensory Disability Organisations to manage this money, Royal Blind Society won the tender.

At the same time DBA(NSW) had received over $100,000 raised by the South Sydney Leagues Club and CFMEU Union, following a talk given on radio for Deafblind Awareness Week. RBS met with members of DBA(NSW) and asked that the CFMEU money be used, together with the DADHC money, to start a DeafBlind Service, as this may be the only chance to achieve this aim. Deafblind members agreed to this, on the condition that the cluster housing be only put on hold, not abandoned. So Deafblind Service was born within RBS in October 2003, with the equivalent of 2 full time staff. This was accepted by the merged organisation Vision Australia, but this is only the beginning, there is still much to be done.