One in three people with a learning disability might also have a sight problem – but for thousands this will go undiagnosed.
For most of his life Peter Hibberd’s son Gavin was one of them. For years Hibberd felt sure that his son was contending with a visual impairment in addition to his primary disability.
“When Gavin was born we noticed there was a slight defect in his eye. We’d asked questions about it and the doctor had said just leave it alone. When we came to Scotland we decided to go to a consultant and he looked at Gavin and, to be quite honest, he didn’t really give us any useful information.”
When Gavin took part in the Special Olympics in Cardiff his eyes were checked again and his parents were given a report, “But there was very little on there that we could understand, there were lots of numbers.”
Then his father heard about training courses run by RNIB Scotland, which had been designed to help those involved in the provision or design of care for people with a learning disability to better understand the nature and implication of sight problems and sight loss.
“I thought that might be useful because we knew Gavin had a problem. We knew he had a problem with distance and depth perception. We knew that simply because he trips over things fairly easily unless he is used to the area. He has problems with multi-coloured carpets and going up and down steps sometimes. It is alright knowing that, but you don’t really know how Gavin is seeing all of this and I felt I really needed to understand Gavin’s problem.”
Hibberd says he was “extremely impressed” with the service. While the report established that nothing could be done to solve Gavin’s particular visual impairment, it nevertheless made his family and carers more aware of the challenges and risks he faces and made recommendations for simple improvements.
“It pointed out things around lighting in his house. We were using low energy bulbs in his bedroom and that was extremely low and it was fairly clear that it was too low and it needed more light in the bedroom so we’ve gone back to ordinary bulbs for him.”
Also, Gavin’s depth perception problem means he is not able to go out unaccompanied as he is not able to judge the distance of cars on the road and, therefore, is at risk, Peter says, adding that being aware of the additional challenges Gavin faces has helped his family and carers better understand the impact his various disabilities have on his life.
“My son has a disability and if he has an eye sight problem as well that is two disabilities he is trying to cope with. And he is slightly autistic, so that is a third one he is trying to cope with.
“In my lifetime, I had a stroke back in 1996 and that disabled me. And I broke my ankle about three years ago and that disabled me. And when I was disabled, I become so frustrated that I couldn’t do what I wanted to do and when I think about people with learning difficulties it must be quite a problem for them, particularly if you are someone like my son who wants to do things. He wants to be part of a community and he has two main problems that he has to cope with to be able to take part in life.”
It is important that people in a similar position know there is an opportunity for one of those disabilities to perhaps be addressed, or at least alleviated by better understanding, he argues.
“If you can remove one of those from the equation then it is a big help. For Gavin, it just so happens they said, ‘Look, he has a problem, it wouldn’t help at all if we put spectacles on him.’ We accept that but at least we have tried, at least we know we have done everything we can to help him. There are a lot of people out there who have not had the opportunity to be checked properly and people should be given that opportunity to sort out those particular disabilities that can be sorted.”
Indeed, around 80 per cent of people with a learning disability will also have some problem with their vision, points out Frances Miller, UK Visual Impairment and Learning. Disability Services Manager, RNIB. In addition to the training developed for family members and carers, the charity also developed training for health and social care professionals to heighten their awareness of this prevalence. The training can prove quite illuminating, she says.
“It almost switches on the light bulb. It actually makes that link for people that the behaviours that they are seeing may in actual fact relate to the person’s vision – challenging or unusual behaviours, like hand flapping, head rocking, that kind of thing.”
However, they wanted to go further than simply pointing out the link, she says.
“We realised that in order for us to do this properly we wanted to give people with learning disabilities the same opportunities as everybody else to go and use the optometrist who is in the local village or town and not have to use acute services.”
RNIB produced a DVD that follows the entire eye-care journey – from gathering information from a client before the appointment, to what alternative tools and techniques can be used to diagnose sight problems – to help give opticians a better understanding of how to tackle a hidden problem that, it says, might be excluding as many as 36,000 people from mainstream eye-care.
“It is a different toolkit,” explains Miller. “They are using things like preferential looking, even just motivators like sweets. If you put, say, a coloured sweet onto a piece of white paper then you would be looking to see if they can locate it…We’ve also used brightly-coloured finger puppets and watched to see where the person is tracking, from right to left, or checking their peripheral vision doing something similar. All these things are motivators that are interesting to follow so it is such simple wee things.”
Peter Carson, chair, Optometry Scotland, says optometrists have been encouraged to “think outside the box” compared to more routine examinations.
“They’ve got to maybe come out of their comfort zone and may need a little more dedicated equipment to be able to do it properly. So we’ve been encouraging people to take up the opportunity to see people with a learning disability when in the past, they might have been a bit reluctant, not about seeing the patient, but they maybe thought they couldn’t provide a good enough service.”
Optometrists have an important role to play here, he argues, particularly where an individual is unable to communicate the difficulties they are experiencing, as a vision assessment may unlock vital clues about their behaviour and care requirements.
“We need to know what the expectations are, visually – this person cannot see anything or visually, this person should be able to see their dinner and feed themselves based on the level of vision they’ve got, so if they are not feeding themselves, it isn’t because they can’t see what they are doing. So there is maybe some other reason that is physical rather than visual.
“So it is putting the pieces of the jigsaw together to work out what difficulties someone might be having are.”