Home > Opinion > Deafblind is more than deaf and blind
Liz Ball
Deafblind is more than deaf and blind
2nd July 2009
Deafblind people have been complaining they haven't been given appropriate help by their local authorities, due to what the charity Sense calls "stagnation" since guidelines were published in 2001 by the Department of Health. A reissue of guidance was announced last week and marked in a parliamentary reception on 30 June. Liz Ball is deafblind and explains how this can make a difference to her life.
Last Tuesday saw a rare event - me rejoicing over the publication of a
Department of Health circular. You see, this wasn't dull government drivel; this was the long awaited re-issue of the deafblind guidance that could transform my life!
The statutory guidance, Social Care for Deafblind Children and Adults, places a duty on local authorities to do a number of things, including identifying deafblind people and providing us with a specialist assessment that should consider the need for one-to-one support.
The guidance was first issued in 2001. Over the next five years the number of deafblind people known to local authorities doubled. There was also a 40% increase in the number of deafblind people receiving specialist support, but this number fell again in 2006 when the guidance expired.
But statistics fail to show the real value of this guidance, which is the benefit to deafblind individuals.
Department of Health circular. You see, this wasn't dull government drivel; this was the long awaited re-issue of the deafblind guidance that could transform my life!
The statutory guidance, Social Care for Deafblind Children and Adults, places a duty on local authorities to do a number of things, including identifying deafblind people and providing us with a specialist assessment that should consider the need for one-to-one support.
The guidance was first issued in 2001. Over the next five years the number of deafblind people known to local authorities doubled. There was also a 40% increase in the number of deafblind people receiving specialist support, but this number fell again in 2006 when the guidance expired.
But statistics fail to show the real value of this guidance, which is the benefit to deafblind individuals.
Families, signing a Deafblind Guidance pledge card
Since becoming deafblind I've done lots of moving around between different local authorities. Each time I've moved, social services have assessed my needs. Most of these assessments have not been carried out in accordance with the deafblind guidance; the assessors have known only about people with a single sensory impairment.
They've considered my deafness and blindness as separate issues. I've been offered sign language support even though I don't sign. I've even been advised to learn to lipread, something that would be impossible given that I'm blind! I've been offered mobility training to teach me to listen to traffic to help me cross roads. Never mind that I can't hear traffic.
Really, I think they were assessing the stereotyped needs of a blind person plus a deaf person, not my needs as a deafblind person. They failed to take account of the interaction of deafness and blindness and so failed to identify the many areas of my life in which I need support and they recommended inappropriate support, which, I think, can do more harm than good. It left me a prisoner in my own home.
They've considered my deafness and blindness as separate issues. I've been offered sign language support even though I don't sign. I've even been advised to learn to lipread, something that would be impossible given that I'm blind! I've been offered mobility training to teach me to listen to traffic to help me cross roads. Never mind that I can't hear traffic.
Really, I think they were assessing the stereotyped needs of a blind person plus a deaf person, not my needs as a deafblind person. They failed to take account of the interaction of deafness and blindness and so failed to identify the many areas of my life in which I need support and they recommended inappropriate support, which, I think, can do more harm than good. It left me a prisoner in my own home.
at the launch of the Deafblind Guidance. Daniel is
deafblind and uses finger spelling
When, finally, I secured an assessment that did meet the requirements of the deafblind guidance, and the assessor was a deafblind specialist, it was a very different experience.
No two deafblind people are the same, and so the assessor took time and care to identify how deafblindness affects me as an individual, what my needs are, and what kind of service could meet those needs. Although I'm still waiting for final agreement about entitlement, I'm optimistic that it will give me my life back.
The main thing I am hoping for is agreement for me to use direct payments for a communicator-guide who can meet both my mobility and communication needs. They would support me with activities such as socialising, attending appointments, shopping, communicating with workmen (for example a plumber to safety-check my boiler), dealing with inaccessible correspondence, etc. Communicator-guides are people who are specially trained to provide guiding and communication support to deafblind people in our everyday lives. The difference between a communicator-guide and a normal PA is the level of skill needed. To work with me, they need to have good deafblind manual skills so that they can communicate easily with me themselves and facilitate communication with other people. They also need a good understanding of the kind of information about what is happening around me that I need to be told.
The guidance applies to England, where there are an estimated 193,000 deafblind people who could benefit. That's why the re-issue of the guidance was celebrated last week during Deafblind Awareness Week.
• Visit Sense's Deafblind Awareness Week pages to find out about the lives of deafblind people, watch films, view a virtual photo gallery and indulge your senses.
No two deafblind people are the same, and so the assessor took time and care to identify how deafblindness affects me as an individual, what my needs are, and what kind of service could meet those needs. Although I'm still waiting for final agreement about entitlement, I'm optimistic that it will give me my life back.
The main thing I am hoping for is agreement for me to use direct payments for a communicator-guide who can meet both my mobility and communication needs. They would support me with activities such as socialising, attending appointments, shopping, communicating with workmen (for example a plumber to safety-check my boiler), dealing with inaccessible correspondence, etc. Communicator-guides are people who are specially trained to provide guiding and communication support to deafblind people in our everyday lives. The difference between a communicator-guide and a normal PA is the level of skill needed. To work with me, they need to have good deafblind manual skills so that they can communicate easily with me themselves and facilitate communication with other people. They also need a good understanding of the kind of information about what is happening around me that I need to be told.
The guidance applies to England, where there are an estimated 193,000 deafblind people who could benefit. That's why the re-issue of the guidance was celebrated last week during Deafblind Awareness Week.
• Visit Sense's Deafblind Awareness Week pages to find out about the lives of deafblind people, watch films, view a virtual photo gallery and indulge your senses.
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Well done Liz for setting out the problem in such a clear manner. My daughter is deafblind (partially sighted and partially hearing), and the deafblind guidance gave my wife and me the confidence to ask our local authority for the correct assessment and support. In many cases we knew more than the social worker, and we could e-mail them the Sense links to the guidance document
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I have a hearing and sight problem and am on the local authority's list of deafblind individuals. I’m of working age and live in the South-east of England.
What have I got since being classed as deafblind?
Referral to Deafblind UK.
Referral by Social Worker to a scheme where I have somebody to assist me to do identified activity/activities but this support only lasts for 18 months as the idea is that, after this period, you do whatever you set out to do independently. The volunteer assigned to me works full-time so they're not available during the day so this isn't too helpful. Nice enough helper though its just a shame she doesn't know how to talk to me clearly so I don't always understand what she says to me. I don't do any form of signing and obviously cannot see to lip read.
My Social Worker referred me to a scheme to help me into a new job. As I wasn't visited by the person assigned to help me from the scheme often enough (supposed to be every fortnight but never was), I went back to my Jobcentre to find out if there was anything else available. Unfortunately, as I told the woman helping me on the original employment scheme I had gone to Jobcentre I was thrown off said scheme and not even informed of this until I rung the lady up who told me what the situation was. I was so very cross. I was told I was "top of the list" to be reinstated but I have never been.
I tried to go on another local employment scheme funded by Jobcentre but lady refused to provide me with enlarging software to enable me to learn to apply for jobs on her computers. Actually, without my knowledge or approval, she involved herself in setting something else up for me in another town that I didn't go ahead with, as it was a course that didn't assist in teaching me how to do job applications and about interview technique.
I have no support whatsoever now but I can hear quite well with my one hearing aid and have always had a sight problem caused by rubella so I'm well adapted to serious sight loss. I was born totally blind so I'm glad I had ops that gave me some sight in one eye even though it’s far from perfect.
I'm very isolated now I've been made redundant. I go to a local blind club once a week but its unsuitable in that its members are mostly very elderly. I also do half day a month helping out at a local blind charity's help desk where we give out leaflets to public, sell small items for visually impaired and I tell callers about my experience of living with sight loss.
What I desperately need now is proper assistance to find and hold down another job. I've lost loads of confidence since leaving work. In the absence of any proper assistance locally to make this a reality I've now applied to go to RNIB College Loughborough, miles away from my home and husband. He's not too happy about me going but I fail to see how I can get back into employment without this rather drastic action.
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