Hi-VisUK has volunteers trained in interview skills to support our research and evaluation evaluation activities.
Hartlepool Borough Council is a key partner with Hi-VisUK in the development of a new pioneering co-production model for identification and support of older people living with dual sensory loss.
Hi-VisUK will continue the investment by our sister project, In Good Hands, to build the capacity of Sunderland and North Durham Royal Society for the Blind to become a dual sensory service for their members and local older people in Sunderland and north County Durham.
Their volunteers and staff are being supported with training in deafblind awareness and how to use our identification tool. This will enable them to identify older people with the condition and provide appropriate support.
Older people identified as having a dual sensory loss will be supported by the Society’s volunteers and where appropriate by HiVisUK staff to ensure they get the appropriate response from other local service providers.
This is one of our unique capacity building models that Hi-VisUK will promote across the country.
To be successful at Hi-VisUK we will constantly work to raise our profile at a local and regional level (as well as nationally). Opportunity to talk with other local disability organisations, national manufacturers and suppliers of aids and equipment is one part of a complex jigsaw of supporting organisations – who all need to know more about age acquired deafblindness. It is also an opportunity to meet older people with deafblindness who visited such events as photographed above.
October 1st is Older People’s Day in England. Hi-VisUK will be organising its unique friendly “Talk and TryTM” sessions in care settings. The aim is to support the Full of Life principle by talking with elderly residents who whilst not recognised as deafblind, are found to have problems with both senses. At our sessions they can learn about aids and support that can help them continue with activities and interests.
Typically around 20 elderly residents will enjoy tea and cakes and the chance to talk with Hi-VisUK staff. They will try a range of low cost, easy to see and use equipment that help with daily tasks. For example, equipment to help safely pour a hot drink reducing the risk of scalding; a reading guide to make reading a newspaper, a book or a letter more easy; high colour contrast non-slip mats to aid food preparation in the kitchen, and big print magazines and TV guides.
For residents whose hearing has deteriorated significantly, our staff find a quiet corner during the “talk and try” sessions for one-to-one conversations and to make the most of any residual hearing.
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.
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.”
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.”
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.
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.”