MONDAY 9 JULY 2007

MS RUTH SCOTT, PROFESSOR TONY HOLLAND, MS AMY FORGACS, MS PHILIPA BRAGMAN AND MR SHAUN WEBSTER

  Q83  Chairman: Thank you for coming to join us for our second session. We are joined by Ruth Scott, Head of Policy and Government Affairs for SCOPE; Tony Holland, who is the Health Foundation Chair in Learning Disabilities, Department of Psychiatry, and Amy Forgacs, Cambridge Centre for Participation, and Amy has her facilitator, Wendy; and Philipa Bragman, Director, and Shaun Webster, Project Co-Ordinator, Change. Does anybody want to make any opening remarks?

  Mr Webster: If you do not understand me, I will repeat myself. I want to tell you what parents have told me. I have been talking to parents with learning disabilities all over the country. Many parents have told us about the injustice and heartbreak they have suffered. They have had their children taken away by Social Services in unjust practices. They told me that when they asked for support, they did not get any until it was too late. We talk about communication; they told me that when social workers and other professionals come into their homes, they talk jargon. They talk about assessments.

  Q84  Chairman: Would you like to continue, Mr Webster?

  Mr Webster: We talked about assessments. They told made that when they have an assessment, they always look at things they cannot do, never things they can do. They want assessments at home and over a longer period of time. We talked about adoption. They told me that when they their children are taken away, they are already upset. It feels like the children have died, and it made them mad. I talked to parents with learning disabilities about social workers not working together. I talked to parents with learning disabilities about Child Protection. They have no respect for parents with learning disabilities. Too often they do not listen and understand their learning disability. A lot of parents with learning disabilities do not know about their rights. They are told things that happen. A mum with a learning disability went to hospital to have a baby, but Child Protection was there, waiting to take the baby away, and she never got to bond with her son. This is a human rights issue. Sometimes, when parents with learning disabilities have two or three children, they have to pick which child to keep because Child Protection think they cannot cope. One lady told me that in the end she lost all her kids. Sometimes social workers are waiting outside the school gates to take their children away. This is a form of legalised kidnapping. This is against their human rights. Accessible information. I believe everybody needs to work in easy words and pictures because things need to be accessible. At Change we make sure everything is accessible just as all other leaflets and booklets. We have a word-to-picture team of people with learning disabilities who help us to make everything accessible. I think every organisation and work place should use these words and pictures. This would respect our human rights.

  Q85  Chairman: Thank you very much. Perhaps I can ask a question to follow up on what you just said, Shaun. You talked about the jargon and the inadequate information that is available, particularly for parents. What do you think is the most important thing to have easy to understand information about?

  Mr Webster: Everything has to be accessible. It cannot be just one thing, about benefits or about work. It has to be everything across the board. People with learning disabilities need to train professionals in those types of jobs to make things accessible, because it is all linked together.

  Ms Bragman: Can I just add something? I think at the moment organisations have a different understanding of what "Easy Read" means. We have examples we have brought with us of Easy Read information that a lot of people with learning disabilities do not actually find easy to read and there is no code of practice. We in Change think it is very important that there are standards of Easy Read information. People with learning disabilities in Change have been training inspectors from the Commission for Social Care Inspection in how to make information accessible, and we have worked with different authorities where we have trained the people that work in those authorities in how to make information accessible. We have worked with people with learning disabilities, so they can check whether the information is accessible or not, which we feel also needs to happen as the other side of that coin.

  Q86  Chairman: Could you describe one or two good and bad examples for the record? That would be helpful.

  Ms Bragman: I was hoping you would ask that. This is the Mental Capacity Act, which is in Easy Read, and, if you have a look, the pictures are in black and white, and the same pictures are used to illustrate different text. If you cover the writing with your hand, you should have a good idea from the pictures of what is going on. If you did this here, which is what we do in Change, it is very hard to tell. There is another one here which is produced by the Department of Health.

  Q87  Chairman: Who produced that first one?

  Ms Bragman: The Department for Constitutional Affairs. This is the Department of Health, which is photos, which does not reflect the text, and actually, this is produced by the Valuing People support team, but there is a photo with lots and lots of writing. What people have said to us is that the people that commission information to be made accessible often go for the cheapest and the quickest. They do not quite know what they are looking for and are really pleased when it has pictures. This is what we produce in Change.

  Q88  Chairman: This is a good example?

  Ms Bragman: This is a good example. We have our own standards, so people with learning disabilities say it is very important to have a yellow background, bold print and that the pictures tell a story.

  Q89  Chairman: Why is a yellow background important?

  Ms Bragman: Because some people with learning difficulties say the words jump around on a white background.

  Mr Webster: I myself am dyslexic. If I see black writing on a white background, I cannot read it. It is not accessible for myself and for people like myself.

  Q90  Chairman: So it is easier with a yellow background?

  Mr Webster: Yes, a yellow background is a lot better.

  Ms Bragman: This is good practice guidance for parents with learning disabilities that has just come out from the Department of Health.

  Mr Webster: This is You and Your Baby. This is for first-time parents.

  Q91  Chairman: It is a rather fat book. Does the size matter?

  Ms Bragman: No. It is a difficult thing. When you make information easier to understand, you do not want to make it intimidating but, if you are adding pictures, it is going to take more space.

  Mr Webster: We did research on this with artists and writers. We all got together to make this accessible, because a lot of parents get this book for free but soon, when our books run out, the parents will have to pay for it.

  Q92  Chairman: Do you want to add anything to the points that Shaun has made about what should or should not be in Easy Read, the problems that have arisen and any examples?

  Professor Holland: I think I would expand it a bit to go beyond just the availability of written and picture material and argue that we should be looking to what is sometimes referred to as as a total communication environment. If you go into, say, group homes for people with learning disabilities who have problems with communication, you would expect that the staff are trained in the use of sign, if sign is what the residents use. You should expect that there are ways of presenting information about their lives, what people are going to do during the day. It goes beyond just written material, yet one problem is that that is not usually in the contract for organisations that are contracted to provide social care. It is not there. You have no say over how they might improve their communication.

  Q93  Chairman: Amy, do you want to say anything about this?

  Ms Forgacs: I was just thinking. I agree with the point that was made earlier about how all public services should make their information in Easy Read more accessible or what have you. I suppose the Disability Equality Duty would be one thing that says that people need to work with people who have learning difficulties to make information accessible, because if you are given a leaflet full of difficult words that you cannot understand, you will not be able to have the same kind of fulfilled life and you would not be able to do so much. I have an example of something that Speaking Up did with people with learning difficulties.

  Q94  Chairman: This is a bad example you are holding up now, is it, or a good one?

  Ms Forgacs: No, this is a good example of a book that was done with people with learning difficulties to make accessible on bereavement, called "When Someone Dies". It covers things like the kind of emotions that a person might feel when someone dies, and that it is okay and natural to feel those kinds of feelings. There is a pull-out mood chart, and the idea is for people who support people with learning difficulties to look through a book like that, if that individual feels that they want someone to support them.

  Q95  Chairman: So basically the message I think you are giving us, Amy, is the same as Shaun was saying, that if these books are going to work you have to use people with learning disabilities to help write them?

  Ms Forgacs: Absolutely. I would say that nobody knows how better to deliver information for people with learning difficulties than the people themselves who know what kinds of things people might need.

  Q96  Chairman: Ruth, do you want to add anything at this point?

  Ms Scott: No. I think everyone has covered it.

  Ms Bragman: I just want to say that to make reports accessible that are really long and thick is quite an impossible job for people with learning disabilities. There is lots of information and we think it is important that people that are working in services have training by people with learning disabilities so that they make good accessible information but not that people with learning disabilities should be making absolutely everything accessible.

  Q97  Lord Judd: Ruth, Scope has told us that in its experience many people with learning disabilities and communication impairments are not currently able to convey their needs and wishes because they lack access to a communication aid. For the record, can you describe for the Committee some of the additional barriers that people with learning disabilities and other impairments who do not use speech to communicate face in securing respect for their dignity with human rights, which matters as much to them as the rights of anybody else?

  Ms Scott: It pretty goes much without saying that if you cannot communicate using speech you need to find some alternative way of getting your wishes understood, making decisions, communicating what you want, how you want to live. A lot of people we work with, because a lot of people have no speech at all, people suffering from cerebral palsy and other people, report to us that they have great difficulty in accessing the assistive and augmentative communication technology that is available in order to help them speak, such as providing an artificial voice that they can programme to speak for them. Scope have been talking about this for quite a long time and the Government did take some action in terms of supporting school-age children to access communication equipment, but unfortunately that project has now ended and there is nothing there to replace it. There is also very little evidence or information about how many people might benefit from communication aids, how many there are with communication impairment, full stop, and how many people have a communication impairment at the level at which they might require assistive technology to enable them to communicate their wishes. We are particularly concerned, obviously, in the context of human rights, that if people cannot communicate and cannot say what they want, they cannot indicate yes or no, it is almost impossible for them to have choice and control over any aspect of their life because all their decisions are going to be made for them. We believe that it is a really crucial human rights issue, particularly as to communication equipment because without that assistive technology people are essentially left gagged and unable to communicate even their most basic wishes.

  Q98  Chairman: What you are saying is that we do not actually know how many people there are?

  Ms Scott: The Government does not collect any statistics. We have done a literature review and produced some figures that we think are probably quite accurate but it would be great, obviously, if there were official statistics to confirm that. We estimate that probably 2.5% of the population have some kind of communication support need and between 0.4% and 1% of those would benefit from some form of assistive technology in terms of enabling them to communicate. That equates to between 200,000 and 500,000 people.

  Q99  Lord Judd: And you are saying that what is particularly frustrating is that the techniques are proven and available but are not in reality made available because of resource problems and probably that includes staff as well as money?

  Ms Scott: Yes. There are probably three main factors in terms of access to communication aids, one of which is getting an adequate assessment of need, people being properly assessed and saying, "This is what you want and this is how you would benefit". The second is getting hold of the equipment itself, some of which is quite expensive, and in general there are not that many people with learning and communication needs so because local authorities are supposed to provide this sort of equipment they do not in general prioritise three, four, five individuals who need very high cost equipment over the money that could be spent perhaps on lots more people for less expensive equipment. A third is that the ongoing level of support that people need to programme their equipment, to ensure that their equipment is upgraded and that people not only know how to use it themselves but people around them who support the user know how to use that equipment. There is a statistic that suggests that about 75% of hi-tech communication aids are abandoned by users because no-one around them has support to use it properly, which is a travesty.