Supporting people with learning disabilities, complex disabilities and sight loss.
“After my surgery for keratoconus, some of the support I got was not very good,” said Scott Watkin. “I was basically in doing it in my own flat, with a different person coming into my flat every half hour. Sometimes people don’t understand that after-care is very important: I was out there, on my own with my family.”
As Watkin, who has learning disabilities himself, explained with his colleague Martin Thomas of SeeAbility at NB Live, vision loss is particularly predominant among people with learning disabilities: yet far too little is being done to address the needs of this group. Far too often sight loss is overlooked or discounted, and/or is considered the responsibility of ‘the other’ professionals.
Vision problems are, in fact, surprisingly common among people with learning disabilities of the 1.5 million people in the UK who are known to have a learning disability, at least one in 10 has significant sight loss. This is particularly the case for people who are more profoundly disabled. Six in 10 people with learning disabilities need glasses and though this sight loss is less serious, they may not have glasses and/or the support to get used to them.
Overall, the estimates suggest that in the UK today around 96,500 adults with learning disabilities (including 42,000 known to the statutory services) are blind or partially sighted. This may be the result of an organic and/or structural problem linked to the cause of the learning disability; the eye and the brain are very closely connected.
Several conditions (such as Down’s Syndrome and cerebral palsy) are particularly likely to cause eye problems. Many people, particularly at that profounder end of the spectrum, have multiple disabilities in any case. However, the problem is also that sight problems from the correctable to the disabling are going unnoticed.
Even people with no cognitive problems often don’t realise that their sight is deteriorating, or that it has never been very good. Someone with communication problems will find it even harder to explain that they cannot see than someone in the mainstream population.
Behaving in a distressed and/or challenging manner is often just taken as a sign that someone is having a ‘bad day’. “Half of the people in this group may also have difficulty reading the alphabet,” points out Linda Mitchell of RNIB Scotland, “so the traditional eye-chart may not be an appropriate testing method for them.”
But there are also assumptions about what people need sight for, and that for some people, it just isn’t that important. “Staff just don’t look for vision loss and so people aren’t necessarily getting eye tests, even,” said Thomas. “People make assumptions on behalf of people with learning disabilities that they won’t wear glasses, or that they don’t need fine vision.” Obviously, this also means that completely correctable conditions : from short sight to cataract : as well as completely arrestable though irreversible ones like glaucoma are going unnoticed, or only noticed at a point where they have resulted in considerable damage.
People with learning disabilities may also have mental health conditions as well. In fact the Foundation for People with Learning Disabilities estimates that between 25 per cent and 40 per cent of people with learning disabilities also has a mental health problem. And, as Thomas points out, this includes a growing number of people with dementia (especially people with Down’s syndrome, who are at particular risk of developing Alzheimer’s disease). “For the first time ever, people with learning disabilities are living longer and are getting sight problems that are related to age; with the same assumption that a problem must be dementia when it could be sight loss, or a combination of the two.”
”The mental health problem itself may be caused - or at least made worse - by the experience of sight loss (which is particularly likely given the evidence that many people who are losing their sight become very isolated and/or develop depression).
But people react to sight loss with considerable mental distress. Many people with learning disabilities don’t have access to the usual range of activities, so lose that and their quality of life is very poor.
Very often, if they lose their sight, they can’t do the two or three things they really enjoy,” Thomas said. “It’s not uncommon to hear of people who have it harmed or hit their eyes repeatedly, hoping that this will get them to work again, and staff and carers have still not recognised this. Without the usual levels of communication and trust in others, people are at a higher risk of self-harm, loss of skills or isolation.”
Clearly, blind and partially sighted people with learning disabilities need professional recognition and support. Thomas and Watkin identify two main problems with what is currently on offer. The first is that people fall between the two professional teams - learning disability and sensory impairment - and are passed between them (and that is if the learning disability team has acknowledged the impact of the sight problem in the first place).
If someone has been the responsibility of the learning disability team all their life up till now, it’s a whole new world for the professionals to start getting to grips with; many people, Thomas points out, just don’t know the terms or who does what.
The other is that even when the support is put into place, the usual ways of teaching people new strategies for coping with life as a blind person aren’t going to be appropriate with people in this client group. This is not just about understanding, for example how to communicate with someone who does not speak, but also focusing on imparting effective, daily living strategies in a way that the client will grasp. In fact, that may mean training the staff and carers who see this person every day, rather than the client themselves.
“A session on how to use a liquid level indicator once a week is a lost cause. Clients need to re-learn and practise, again and again, because it will take them longer to learn how to do this. Sadly we come across staff teams who feel their job is to go in and help, not teach. A whole team, including rehab workers and ECLOs need to spend time giving staff information about sight loss, just as staff are trained about epilepsy.
"Things like learning to use a long cane will always be a specialist service, but all the daily living stuff that makes it possible to have a decent quality of life should be reinforced by staff every minute of the day.”
It’s also a matter of acknowledging that many clients already have a fairly restricted life so that they need to make the most of what is available to them. “People need to learn how to dress themselves, and feel good about themselves.”
Thomas has conflicting views on what the future holds for blind and partially sighted people with learning disabilities.” With the introduction of the Social Care Bill, rehab officers are going to be squeezed in terms of who they work with. That clearly is going to rule out work with people with more complex needs, who take longer learning things.”
On the other hand, there are new programmes afoot and this is part of a (slow) shift overall. “People with learning disabilities have very different expectations of services these days, and are living much more integrated life. More people are going to be referred and want answers. We need to provide those answers: and that is through educating the workforce.”