Feature
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Challenging deafblindness
At two years and eight months, Diam Zafar's relationship with the world is limited to what he can smell, taste and touch. He is stranded within a uniquely isolating disability called deafblindness.
Diam (pronounced 'Dime') is the first-born child of Simi Gulzar and Zafar Gondal. Able only to distinguish between light and dark he has already had two eye operations for glaucoma and cataracts and the prognosis for his sight is not good. His best hope of developing speech or language is from a Cochlear Implant to improve his hearing.
Diam was placed on the waiting list two years ago when it became clear that he couldn't wear hearing aids. In March, Diam's implant operation, costing $50,000, was cancelled due to lack of funding. Diam now has to wait until at least July (the beginning of the next funding year) to get his implant.
With every passing week, Diam drops further and further behind other children his age who have learnt to verbally interact with and make sense of their worlds. His parents are feeling equally isolated from a medical system which they hoped would provide a lifeline through which they could communicate with their son.
"It's a really tough time," says Diam's mum Simi Gulzar.
Diam was also born with a cleft palette which was not corrected until 13 months. Diam's family are still paying the price for that delay.
"For a long time he didn't eat and then he had no connection between food and hunger. We don't have any ability to help him make those connections. Diam is a very bright boy and he gets frustrated easily because he can't do what he wants and we can't help him to understand why. He's growing and is developing behavioural problems, which take so much of our time and energy. It's so frustrating and disappointing.
"We are so tired from caring for Diam we have no time for this extra work. We felt there was no-one to help us."
The Foundation's Deafblind Services stepped in with moral and practical support for Diam's family. Deafblind Services was recognised within the Foundation
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as a distinct service in 1997. Deafblindness is neither blindness with deafness nor deafness with blindness. It's a unique disability with its own set of difficulties.
As Diam's family situation shows, the disability is isolating not only for the individuals concerned but also for their caregivers and partners.
"It affects every aspect of their lives," says Gloria Campbell, Practice Adviser for Deafblind Services.
"For children, most of the information they use to learn about the world around them comes through their eyes and ears. For adults who lose both senses, it means an enormous re-adjustment in learning special methods of communication, orientation and mobility and just to function in every day life."
Previously the greatest number of people born deafblind was due to rubella. Today there are a number of other reasons for congenital deafblindness including drugs-related, genetic disorders and other diseases contracted during pregnancy. With Usher Syndrome, people are born deaf and later become blind. Those who may lose vision and hearing in later life do so through accidents, ageing or virulent diseases such as meningitis.
The Foundation's Deafblind Services is the only one in New Zealand whose raison d'etre is solely to support deafblindness. Deafblind people have great difficulty in accessing services – most have received none at all since reaching adulthood. Given the near invisibility of the condition, the numbers affected in New Zealand were unreliable until the Foundation carried out a survey in 2004. It now has around 600 people who have indicated difficulties with both sight and hearing loss. Based on UK estimates of 40 people in every 100,000, there could well be as many as 1520 affected nationally by deafblindness.
Most health services are unaware of the uniqueness of deafblindness, and treat each condition – deafness and blindness - as separate entities. "There can be as many as 75 people involved in a person's care. This includes professionals, paraprofessionals, support people, funding agencies, right down to the taxi driver that might be taking a child to a special school," says Gloria.
"Deafblind Services acts as a coordinator for those professionals as well as being a resource for sharing information and an outreach service for clients and their families."
The Foundation also employs a national trainer who travels the country educating health professionals about the disability. Lucy Mackintosh was recruited
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from a UK deafblind organisation, Sense.
"It's hard for people to really understand what's going on for a deafblind child," she says.
"Deafblind people don't fit into the round holes that services expect them to."
Lucy also provides training to other organisations and professions such as trainee resource teachers and teachers of the deaf at the Auckland College of Education. These two-day sessions cover the range and causes of deafblindness, the complex and interrelated needs children have and methods and systems of communication.
Specialist services, she says, have been present for longer in the UK, where guidance for local authorities is firmly in place. Local authorities are required to carry out assessments and provide services. "On the other hand though, services in New Zealand are flexible and can be responsive to individual needs because New Zealand is much smaller."
In recognition that each person has different needs, the Foundation piloted a programme aimed at addressing social isolation. Paid "communicator guides" and "interveners" began working in the community in 2003, helping clients to interact with their worlds.
Jacqui Iseli is a paid communicator guide who works with six deafblind members. While Jacqui teaches them tactile and sign language, takes them to appointments and sometimes shopping, her role is much more than that. The joy in her job is knowing that she is giving a person the confidence to go out again into a world that had seemed too difficult on their own.
"We've been described by clients as a human guide dog that fortunately drives as well!" she says. "Being someone's eyes and ears, you screen for obstacles and give them information about the environment. You summarise information and try to get it across through sign language or speaking via the hand in as few words as possible. It's very tiring for our clients to have to concentrate so hard on what's being communicated.
"Often they'll miss what someone has said to them so my other role is to ask the person to
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come closer and repeat what they said. Lots of people are too scared to approach a person with that disability," she says. "I encourage people to try and get over feeling inadequate. It takes time to pick up the skills to communicate directly with someone who is deafblind but it's not insurmountable."
Working with people who are deafblind has given Jacqui a new appreciation for her sight and hearing. She also has more understanding of how heavily time can weigh on your hands without entertainment such as radio, TV, and books or newspapers, and of the human spirit of survival.
"It's been a privilege to work with my deafblind clients," she says. "They all have an amazing sense of humour. I don't think I've ever cried or laughed so much as I did last year."
June 27 is Helen Keller Communication Day.
Helen Keller was a remarkable deafblind woman who championed the right of every deafblind person to an education and to participate fully in society. This year's theme is ‘Are you being served?' highlighting the need for more funding to provide more services.
Deafblind Service Delivery Model
The Deafblind Service Delivery model is designed to provide a comprehensive service to people who are congenital and adventitious deafblind in New Zealand. Currently, it has been only partially implemented with Co-ordinators domiciled in Auckland, Wellington and Christchurch with a pilot Communicator Guide/Intervener service having been trialled in Auckland. The model, if fully government funded and implemented, would maintain a core of services provided by deafblind specialists including Co-ordinators, Community Support, Vocational / Recreational and Respite Care, a National Trainer and a Co-ordinator for a Communicator Guide and Intervener service. It also allows for RNZFB Orientation and Mobility, Techniques of Daily Living and Communications / Technology staff to have specialist training in deafblindness. Localised services would be provided where possible through the employment of Interveners and Communicator Guides and volunteer support.
The service delivery model is designed to interface with, and enhance, services provided by other agencies.