“I will use this tomorrow with my Grandad!”

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Our highly practical Deafblind courses give participants a uniquely rounded understanding of the role and the skills required when guiding a deafblind person. After our training, not only can you say what a communicator guide is but you can do it too! The day builds on our deafblindness awareness foundation course that participants need to do before they can enrol onto this course.

Participants particularly enjoy the challenge of guiding and of being guided blindfold or wearing sight-loss simulation glasses! Navigating around a room, up and down stairs, in and out of doors, sitting at a dinner table and getting into a car – such a lot to learn you may think but the feedback says: “Enjoyed it all day!” “Very good”, “I can use all I have learned straight away”, “The training I had getting a deafblind person into a car I will use tomorrow with my Grandad who is deafblind”.

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Creating awareness

Our Foundation course in deafblindeness awareness is proving to be really popular with a wide range of people. Particpants come from a broad range of organisations in the community, including care service providers from private, public and voluntary sectors.

Feedback is positive: “I enjoyed the whole course”, “I found it all very interesting”, I enjoyed learning about the obstacles a deafblind person faces in every day life”, “Am looking forward to your other training”, “Gained knowledge and guidance around different types of deafblindness”, Comprehensive outline of deafblindness that I feel I can put in to action at work and in my own life tomorrow”, “Lots of learning styles catered for!”,

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Training for Real Change

21 sensory support and adult social care workers/managers/support workers attended our level 3 qualification Specialist Deafblind Assessor course.

Feedback has been very positive. Again, professionals said they cherished the opportunity to learn abut deafblindness together so they can take this back to their teams, and to “get to know how deafblind support is shaped across the region”.

HiVisUK sees enabling professionals to work together like this across the country as one of the keys to making real change for older people.

“I enjoyed both days. It really made me think of the affects of deafblindeness”. “It gave me a clear understanding of the Care Act 2014”. Many commented on how surprised they were at the prevalence of age acquired deafblindness in the older population; and how much the numbers will grow due to people living longer.

 

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Training the professionals

We recently delivered training to social workers, care workers, and managers from six local authorities. Participants were taking part in our unique Specialist Deafblind Assessor Level 3 training. Feedback has been really positive.

Many have commented on how useful it was to be able to share their new learning journey with peers from different authorities. This is one of our project aims – to bring key stakeholders together for real and lasting change in the north east region.

Others said it had given them “a sense of confidence in working with deafblind people”.

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An all-too-familiar story

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Colin, one of our deaf-blind friends lives about half a mile from his local town centre. There are roadworks throughout the town causing congestion and a large build up of traffic at most times of the day. Colin has just started using his white long cane and has made this journey lots of times before. He described a recent experience.

“I was working in to town as usual and went to cross the road via my usual crossing. I pressed the button and waited… nothing happened. Pressed it again, same result. I did not know at the time but the crossing system had been switched off as it interfered with the roadworks traffic controls and a black bag had been placed over the lights. After waiting for some time, I tried to cross the road by waving my cane in front of me but was unable to do so due to heavy traffic and motorists failing to let me cross.”

“Fortunately a good Samaritan came to my aid. A woman, I never found out who she was, standing on the opposite side of the road saw my dilemna. She marched out in to middle of the road, held out her arms and stopped the traffic.”

This highlights just one of the problems that our friends encounter on a day to day basis and highlights the need for greater awareness all round. It also underlines the need for more trained deafblind aware volunteers to support people like our friend Colin.

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Jackson’s Story

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Jackson Musyoka was born in Kenya from the Kamba peoples. Jackson attended our volunteer training programme in Morpeth. He told us why he became interested in volunteering to support deafblind people:

“I first became aware of these problems when I was a boy at home in Mbitini village in Kenya. I remember I was about 9 years old. There was a 40 year old deaf man who also had not learnt how to speak who had no one to help him. My family decided to look after him. He had some gestures he used and I quickly learnt them and we became good friends. My family saw that we could communicate with each other very well and used to ask me to interpret for them. With the support of my family he was able to get work on the farms around our village. We had lots of laughs together as I could understand his gestures and his lip patterns. Now I volunteer with a deafblind man in Northumberland and I want to know more.”

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Dorothy’s story

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Dorothy works for a local charity providing rehabilitation support, she visits elderly and visually impaired people in their homes to assess their needs.

Dorothy found our deafblind awareness and guiding training: “Amazing! Some of the simulation exercises were challenging but opened my eyes. It was staggering. I already use the training to help me improve my visits.”

“During my visits I am more aware of the signs of potential hearing loss. For example I recently visited a very independent minded, severely visually impaired man. Whereas before the training I would perhaps not have taken his hearing loss into account, as we have been focused on the visual impairment aspect, now I am in a better position to look at both sides. I think my visits following the Silver Dreams, IGH training are better. We are seeing more of our visually impaired clients have a hearing loss and so the learning we have achieved on the deafness side is especially useful and practical.”

“Since the training I have learnt not to make assumptions about how to approach or support a deafblind person. My lipreading skills have improved and I am more aware of how I am communicating.”

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Brian’s story

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Brian took early retirement a couple of years ago. Volunteering for Brian provides him with something to do that is stimulating, but above all else, means he can “help others make the most of their lives.” At the local association where he volunteers Brian drives the minibus for the activities group and sits on their funding committee. Brian heard about our training:

“I was interested partly because I was intrigued about the situation facing a deafblind adult. I then did your training in deafblind awareness and guiding which opened my eyes.”

“You seldom come across disability. Like many people I thought being blind meant having no sight at all, being deaf meant you could not hear anything. What grabbed my attention was the wide range of abilities that visually impaired people have despite their condition. What has been so rewarding has been the way people respond to your help. Doing this work makes you realise how many barriers there are for blind, deaf, and perhaps even more for deafblind people.”

“The training has broadened my mind and made me reflect on the things that could cause issues or make communication more difficult. I have learnt not to assume and that every blind, deaf, deafblind person is the same.”

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Deafblind Voices

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Key to making a difference is how well we listen. It is all about how well we learn: learning how to improve support for older people who acquire deafblindness as a result of living longer lives.

At the heart of our mission is the knowledge that too few people know anything about the condition, including most professionals, and far too many older people become significantly socially isolated soon after the condition develops that can lead to health and wellbeing problems.

“I don’t answer the door as such, only by appointment. I am worried now about letting strangers in – your anxiety is heightened when you lose your sight and hearing. I am anxious about using ATMs in case someone is watching me. I have become a recluse frightened to go out alone for health and safety reasons. I have become very depressed.” A deafblind man who lost his sight and hearing suddenly.

Key to bridging the gap is our idea that older people are ideally placed to support their deafblind peers as volunteer buddies. But only if they are trained and qualified to the extent that they are confident and know how to support an older deafblind person. And when their own sight and hearing starts to deteriorate they will be better placed to cope themselves.

“You have made me aware that deafblindness could happen to me, or my husband too. So the more people know about the condition then the more people there will be who can help us…The connection with ageing made me realise deafblindness is not “their problem”, it’s “our problem” due to the growing numbers of people who are living much longer lives…but you haven’t made me worry anymore about getting older, it has helped me to think more carefully about the future.” A volunteer after receiving our training.

Our project is interested in what an older person who is deafblind has to say about how they are supported and what their experience is before and after they are paired with one of our trained volunteers. Equally we need to hear from our new volunteers as they experience the training and then support an older deafblind person.

“When I heard more I thought it (our work) is a good thing because you need help like this when you lose your sight and your hearing. The most important thing is the people support, the personal support. This is more important to me than any other type of support.” A deafblind person thinking about what it might mean to have a trained HiVisUK volunteer.

“If I was newly assessed and there had been a HiVisUK then, that would be wonderful – my life would come back. It would mean I am enjoying life. It would help my wife.” A deafblind person thinking about what it would have meant if there had been something like HiVisUK when his deafblindness first developed.


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Rob’s Story

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Rob has been volunteering for over 20 years. His first volunteering role was as a youth and community volunteer in North Somerset. After volunteering to work with troubled young people in North Somerset, Rob then volunteered for the Manic Depression Fellowship (now Bipolar UK), and Mencap Gateway. Since moving to Northumberland he has continued volunteering. This includes being a telephone befriender with a local Blind Association’s Sight Line, a befriender with their Social Eyes group, plus numerous church and community groups.

Rob developed Retinitis Pigmentosa as a young boy and is now totally blind. He undertook our deafblind awareness training and feels the training has certainly raised his awareness of deafblindness.

“Some of our groups include people with both sight and hearing difficulties. I am now more aware of the deafness aspects than before. For example, we used the training to help us find a more suitable venue for one of our groups. Some members were finding it difficult to take part when there is background noise.  We found a pub with good natural light, which helps some of the group to see our faces better, and where the music is really discreet so we can hear each other better. It’s the practical tips from your training that have really helped.”

“One of the things I really enjoy about volunteering, even when it is telephone or internet based, is sharing good stories. With the training, if I am asked to buddy a deafblind person I will now be more confident and at least we will be able to have a good conversation using deafblind communication.”

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