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Registration – benefit or bother?
By John Sanders
(Published in RNIB’s NB magazine, December 2008)
Ask a cross-section of visually impaired people whether it is worth registering as severely sight impaired (blind) or sight impaired (partially sighted) and you get some very contradictory answers. Some say registration opens doors and transforms lives. Others complain that it offers few benefits, or worse still stigmatises them.
One reason for such differing views is that many people are told little or nothing at the point of diagnosis. A recent Network 1000 survey (“Access to information, services and support for people with visual impairment”, Network 1000 Survey 2, October 2008) found that 45% of people registered in the previous eight years received no explanation of the registration process at the time of certification in the eye clinic.
Fortunately, many patients in the survey found eye clinic staff very helpful as the following comment shows: “I thought they were very good - especially the nurse who told me about it all.” However, at the other extreme, the survey showed that some medical staff put people off registering: “The doctor’s attitude was very dismissive. [The doctor] actually said that there was no point in him being registered.”
Many working in the social services and voluntary sector acknowledge that on their own the statutory benefits of registration are not necessarily that appealing. For instance, most elderly people already have a free TV licence and bus pass. Even for a young person or the parents of a visually impaired child, those tangible benefits may not outweigh the perceived stigma that often goes with registration.
The main benefits for severely sight impaired people include:
Blind person's personal income tax allowance of £1,730 in 2007-08.
Free NHS sight test.
Fifty percent reduction in the TV licence.
Car parking concessions – for example for the partner of someone who is severely sight impaired.
Free postage on items marked Articles for the Blind.
The main benefits for sight impaired people include:
Disabled Person’s Railcard.
Local travel concessions.
Exemption from BT Directory Enquiry charges.
However, either saying nothing about registration or focusing solely on the limited statutory benefits does not give people the full picture. As one survey participant said: “You don’t really know what there is and what you need to know – it’s things you find out later that makes you wonder why you weren’t told things.”
A more fulfilled life
The reasons why some eye clinic staff fail to explain registration are not clear. Time may be a factor, but many in social services and the voluntary sector believe a lack of awareness of the wider benefits of registration is also partly to blame. As a result, many patients and professionals do not realise that registration often paves the way to emotional and practical support, mobility training and other services.
In reality, it is these softer benefits of being registered that usually have the biggest impact on individual lives. And probably top of the list of those softer benefits is simply being told about the help and support available from social services, rehabilitation officers and the voluntary sector.
Carys Henry, head of services at Cardiff Institute for the Blind (CIB), is among those who believe that registration is one of the major ways of providing pathways to care. “Hopefully, if you are signposted to the right people, registration will enable you to have a more fulfilled life.” For a visually impaired person seeing the right people can mean the difference between being trapped at home alone and maintaining a healthy social life or learning new skills.
In addition to reducing the risk that someone will slip through these vital support networks, registration also increases the likelihood of getting other statutory help. Anecdotal evidence suggests, for example, that being registered means you are more likely to receive Disability Living Allowance (DLA). Similarly, many parents say that registering their child makes it easier to get support in school.
Although no formal link exists between registration and DLA entitlement, most accept that being registered works in your favour. “In some ways that’s the point of registration. If your sight is poor enough that you can be registered, by implication this fulfils key criteria for DLA eligibility,” says Dr Graeme Douglas, co-director of the Visual Impairment Centre for Teaching and Research, School of Education, Birmingham University.
Planning problems
Apart from making it easier for visually impaired people to access services, registration data should in theory help NHS, local and central government plan those services. However, in practice, question marks exist over the reliability of the numbers, with many concerned that the registers do not accurately reflect the scale of sight loss in the UK.
For instance, from her position on the frontline of service provision, Henry is certain that registers frequently under-estimate the true number of severely sight impaired and sight impaired people. So, while recognising that an incomplete register is better than nothing, she fears that the resources provided by local authorities may not always match the scale of need.
On the other hand, Douglas says that most recent data suggests that the difference between the number of people who could register and the number who do register is now lower than was once thought. Still, the shortage of reliable data about the visually impaired population means that no-one can be sure about that.
Missing majority
However, we do know that many people with life limiting sight loss do not register for the simple reason that -- under guidelines drawn up 60 years ago -- their vision is not deemed bad enough. “Without doubt there are lots of people who have a significant problem with their sight who cannot register. But that’s not to say their visual impairment is not affecting their daily life,” says Douglas.
A 2007 research paper (“Estimates of the number of older people with a visual impairment in the UK”, British Journal of Visual Impairment 2007, 25(3):199 – 215.) gives some idea of the number of people in that unregisterable category. It estimated the UK visually impaired population over the age of 65 at between 1.6 million and 2.2 million. About half have visual acuity of between 6/12 and 6/18 so would probably not be able to register under the 1948 guidelines.
Henry backs up that view, pointing out that three out of every four CIB members are not registered, but adds that “they are clearly struggling. So it’s obvious that something is wrong with the registration criteria.” Fortunately, many social services will see people who are not registered. However, that is not the case everywhere, so some people who face daily problems because of sight loss are being denied help.
The solution, believes Henry, is to re-think the whole registration process. She would like to see registration designed around the person rather than the government or the hospital. “It’s too much of a medical model of care at the moment. It has to have a social aspect and take a holistic view.”
© John Sanders, 2008
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John Sanders, freelance journalist, John Sanders
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