Deafblind people are perhaps more isolated than any other disabled group. Unable to read their mail, watch TV or listen to the news, they also struggle to take part in leisure activities or attend hospital appointments without help. As the condition tends to come with age rather than be a disability from birth, it can result in friends falling by the wayside due to communication difficulties.
Debbie James, national services manager at Deafblind UK, says: “Deafblind people just don’t go out. They become isolated in their own homes.”
Deafblind UK has been working with Essex Council’s adult sensory team for eight years. In 2001 the government published the guidance Social Care for Deafblind Children and Adults under the Local Authority Social Services Act 1970. It gave new rights to deafblind people and placed new duties on local authorities. So in April 2004 Deafblind UK and Essex Council went into partnership to launch a pilot scheme – the first nationally – to provide one-off specialist communicator-guide services to deafblind people in the county. Under the scheme, communicator-guides help deafblind people in their everyday life. The scheme has proved so successful that it won Community Care’s disability award for promoting independent living.
With more than 600 deafblind people identified in the region, the need for support is clear. Most deafblind people need one-to-one support at some point to assist them with communication, finding information and mobility.
There are 30 communicator-guides. A full-time support co-ordinator, Jill Rodda, recruits, trains and inducts staff. The communicator- guides receive specialist training from the Council for the Advancement of Communication with Deaf People.
There is no assessment for the pilot; the only criterion is that the person is deafblind. Users can self-refer, and referrals to spend a few hours a week or month with specialist communicator-guides can also come from health and social services or a carer.
If the communicator-guide decides more regular help is needed social services will carry out an assessment. James says: “If that shows it to be an essential need that fits with social services’ criteria, they would go for funding on a regular basis because it has been identified as a need, like home care.”
The reasons for requesting a communicator- guide vary, she says. “One lady likes to go to church once a month for two hours, another client wants to go for a walk by the sea once a month. We take people to visit their relatives. And while families will often do a weekly food shop for them, they can’t see the sell-by dates on food. Sometimes they haven’t been to shops for so long they don’t realise how things have moved on. Also they don’t get to do things like shop for clothes or presents.”
Deafblind UK plans to use the prize money to increase the number of communicator-guide hours available each week so that more people can use the service. As the judges for the awards said: “This scheme gives access to services and leisure activities most people take for granted. It opens doors that would, without positive intervention, remain closed.”