BBC Radio 4 In Touch
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As part of the Radio 4’s Care in the UK season, and as a review by the watchdog CSCI confirms that people are being denied help they would have received a few years ago, In Touch ask what affect the rationing of social care is having on those with a visual impairment.
Peter talks to Nick Whyley, who has had his care cut from fifteen hours a week to nothing, and to Anne Bristow chair of the Committee on Sensory Impairment for the Association of Directors of Adult Social Services.
CARE IN THE UK
CONTACTS – CARE REGULATION AND INSPECTION
THE ASSOCIATION OF DIRECTORS OF ADULT SOCIAL SERVICES (ADASS)
COMMISSION FOR SOCIAL CARE INSPECTION (England only)
St Nicholas Building
St Nicholas Street
Newcastle upon Tyne
Tel: 0845 015 0120
The website also has details of inspections and details of how to complain. Also has a database of care homes
Please note the CSCI's remit applies to England. For information and queries relating to Scotland and Wales please contact:
CARE STANDARDS INSPECTORATE FOR WALES
National Assembly for Wales
SCOTTISH COMMISSION FOR THE REGULATION OF CARE
11 Riverside Drive
Tel: 0845 603 0890
SOCIAL CARE INSTITUTE FOR EXCELLENCE
DEPARTMENT OF HEALTH
DEPARTMENT OF HEALTH FOR NORTHERN IRELAND
CONTACTS - CARERS
COUNSEL AND CARE
Tel: 0845 300 7585 or email firstname.lastname@example.org
A national charity which provides advice, information and financial support and influences future policies, services and funding.
Confidential Advice Line 10am to 4pm, Monday to Friday, except Wednesday afternoons – Easy-read factsheets are available to download free from http://www.counselandcare.org.uk/helping-you/factsheets/ or can be ordered on 020 7241 8522
PRINCESS ROYAL TRUST FOR CARERS
Details of regional offices can be found on the website.
Ruth Pitter House
20-25 Glasshouse Yard
Carersline: 0808 808 7777 (Wed and Thurs 10am - midday and 2-4pm)
Carers UK can provide information or advice to anyone who is caring for a sick, disabled or elderly frail friend or relative at home. They can also put carers in touch with one another and bring their needs and problems to the attention of the Government and media.
91 Mitchell Street
Glasgow G1 3LN
T. 0141 221 9141
Cardiff CF15 9SS
T. 029 2081 1370
CARERS NORTHERN IRELAND
58 Howard Street
Belfast BT1 6PJ
T. 028 9043 9843
CROSSROADS – CARING FOR CARERS
10 Regent Place
Tel: 01788 573653
Crossroads – Caring for Carers is a major charity providing practical support to Carers where they need it most: in the home.
Crossroads has over 200 schemes across England and Wales and provides 3.7 million Care hours to 28,600 Carers.
THE PATIENTS ASSOCIATION.
PO Box 935
Tel: 0845 6084455.
The Patients Association is a charitable organisation providing patients with an opportunity to raise concerns and share experiences of healthcare.
Through their Helpline, correspondence and research we learn from patients the issues that are of concern and work towards improving
HOLIDAY CARE SERVICES
Tel: 0845 1249 971
Minicom: 0845 1249 976
Holiday Care Service is a source of holiday and travel information and support for people with disabilities. They have a database on all aspects of accessible tourism and travel in the UK and overseas. They also have a database of respite care facilities in the UK which offer short term stays for disabled people with or without their carers. Information packs are available.
RELATIVES AND RESIDENTS ASSOCIATION
24 The Ivories
6-18 Northampton Street
Tel: 020 7359 8148
Tel: 020 7359 8136 (Advice Line)
Works to promote the well-being of older residents of care homes through: support and information via the Helpline; carrying out project work that focuses on specific issues; influencing policy and practice; working with local relatives and residents groups in care homes.
Helpline offers support and information on choosing a home, fees, concerns about care, etc.
VITALISE (FORMERLY THE WINGED FELLOWSHIP TRUST)
12 City Forum,
250 City Road
Tel: 0845 345 1972
Organise special holiday weeks for people with disabilities (including dementia), visual impairments and their carers. Age range is from 4 to 90. Volunteers are on hand to help with caring and enable carers to have a break.
DISABLED LIVING FOUNDATION
380-384 Harrow Road
Tel: 0845 130 9177
The Disabled Living Foundation provide information and advice on disability equipment.
BREATHE ON UK
Helpline: 01258 820951
Charity which specifically helps families with children on long-term ventilation (LTV). It is estimated that 600 children in the UK have this condition and that this is growing at 15% per annum.
The Charity’s aims are to provide emotional and practical advice, information and guidance based on personal experience for all involved in this kind of care, and to let families know that they are not alone. Such a facility has hitherto been unavailable.
NATIONAL HOME FEES AGENCY
Tel 0800 99 88 33 (Care Advice Line)
For information on residential care, nursing home care or home care you can contact NHFA.
Another report, this time from Ability Net, reveals that the security measures designed to protect users of social networking sites can lead to the exclusion of those with visual impairments.
Kath Moonan the author of the report joins Peter in the studio as does reporter Mani Djazmi who recounts his own problems with such sites and the experiences of some others.
Some of the website referred to are;
Ability Net are also interested in your views on music downloads and the websites and software you use to get music on the internet. You can visit http://www.abilitynet.org.uk/socialnetworking or email email@example.com.
105 Judd Street
Helpline: 0845 766 9999
Tel: 0207 388 1266 (switchboard/overseas callers)
The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns.
HENSHAWS SOCIETY FOR BLIND PEOPLE (HSBP)
John Derby House
88-92 Talbot Road
Tel: 0161 872 1234
Henshaws provides a wide range of services for people who have sight difficulties. They aim to enable visually impaired people of all ages to maximise their independence and enjoy a high quality of life. They have centres in: Harrogate, Knaresborough, Liverpool, Llandudno, Manchester, Newcastle upon Tyne, Salford, Southport and Trafford.
THE GUIDE DOGS FOR THE BLIND ASSOCIATION (GDBA)
Tel: 0118 983 5555
The GDBA’s mission is to provide guide dogs, mobility and other rehabilitation services that meet the needs of blind and partially sighted people.
ACTION FOR BLIND PEOPLE
14-16 Verney Road
Tel: 0800 915 4666 (info & advice)
Registered charity with national cover that provides practical support in the areas of housing, holidays, information, employment and training, cash grants and welfare rights for blind and partially-sighted people. Leaflets and booklets are available.
NATIONAL LEAGUE OF THE BLIND AND DISABLED
324 Grays Inn Road
Tel: 020 7837 6103
Textphone: 020 7837 6103
National League of the Blind and Disabled is a registered trade union and is involved in all issues regarding the employment of blind and disabled people in the UK.
NATIONAL LIBRARY FOR THE BLIND (NLB)
RNIB Customer Services on 0845 762 6843
The NLB is a registered charity which helps visually impaired people throughout the country continue to enjoy the same access to the world of reading as people who are fully sighted.
Trustees from the Royal National Institute of the Blind (RNIB) and the National Library for the Blind (NLB) have agreed to merge the library services of both charities as of 1 January 2007, creating the new RNIB National Library Service.
EQUALITY AND HUMAN RIGHTS COMMISSION DISABILITY HELPLINE (England)
Stratford upon Avon
Tel: 08457 622 633
Textphone: 08457 622 644
Fax: 08457 778 878
Mon, Tue, Thu, Fri 9:00 am-5:00 pm; Wed 8:00 am-8:00 pm.
EQUALITY AND HUMAN RIGHTS COMMISSION HELPLINE WALES
3 Callaghan Square
0845 604 8810 - Wales main number
0845 604 8820 - Wales textphone
0845 604 8830 - Wales fax
9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon)
EQUALITY AND HUMAN RIGHTS COMMISSION HELPLINE SCOTLAND
The Optima Building
58 Robertson Street
0845 604 5510 - Scotland Main
0845 604 5520 - Scotland Textphone
0845 604 5530 - Scotland – Fax
9:00 am-5:00 pm, Monday to Friday (an out-of-hours service will start running soon)
DISABLED LIVING FOUNDATION
380-384 Harrow Road
Tel: 0845 130 9177
The Disabled Living Foundation provide information and advice on disability equipment.
The BBC is not responsible for external websites
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TX: 29.01.08 2040-2100
PRESENTER: PETER WHITE
PRODUCER: CHERYL GABRIEL
Good evening. Is blindness no longer regarded as enough of a disability to justify your receiving assistance with your care from your local authority? Well in the wake of a national report highlighting the inequalities of the care system, we'll be talking to someone who has recently had his care removed. And we'll be studying the report which says that new computer-based social networks, like Facebook for example, often have security procedures which effectively screen out blind and partially sighted people who want to join them.
Now for the past month Radio Four, led by our sister-programme You and Yours, has been investigating the state of social care in the UK. Today its findings that the system is unequal and not fit for purpose has been confirmed by a report from the Commission for Social Care Inspection, that's effectively the Ofsted of the care world. It confirms that many people are now being denied help in areas such as cleaning, assistance with laundry and shopping, who would have qualified even a few years ago.
Nick Whyley is from Portsmouth. He has retinitis pigmentosa and earlier this year suffered a slight stroke.
Up until January 2007 I received enough money to buy in 14 hours per week split between four areas of care, which were cooking, domestic cleaning, laundry and mail or correspondence filing, that sort of thing. Then I was in one department I was told by that routine assessment that that level should continue pending an assessment by a new department to which I'd been transferred. The financial panel agreed with the first assessment and said yep, 14 hours good, continue. I then received notification from the new department, they said they had reassessed me, without actually visiting me, and they said that two hours were appropriate. They said I had been assessed as if I were a new client and I said - Well I'm not a new client, I was blind last month and blind this month.
Nothing, nothing at all. They did propose to cut it down to two hours, I disagreed very strongly with that and it wrangled backwards and forwards throughout the year until October when they just pulled the plug completely.
What reasons have you been given on either occasion for these two withdrawals of your care?
The first one the only explanation they gave was that we don't do this anymore, which I don't really quite understand, I mean I don't not do blind - I know that's not very good English - but I'm still as blind as I was, just because they changed the title of the department it hasn't made my eyesight any better, I mean that's a miracle of biblical proportions if you can cure it like that.
And the second time, when you had the last two hours taken away?
The second time I had just come out of hospital after two months - I suffered a mild stroke - and they came round and said that because I was in hospital I didn't need the services - any services - and they were suspending them totally and permanently. I tried to argue that yes okay I wasn't - I wasn't having somebody do my cooking because the hospital were doing that but I was still having my mail delivered to the hospital and unless you know differently hospitals don't do personal laundry, so that was still being collected. And of course people were coming to the hospital to do those things two or three times a week. So there was room for negotiation there but there was no consultation, negotiation whatsoever, they just said no, no more, you didn't need it when you were in hospital and we've decided you don't need it now so you're getting nowt.
Just tell me a bit more about the kind of assistance you were receiving.
The person who did my correspondence would come round every day or every other day, really depending on the level of mail I got, I allowed half an hour a day. Then once a week that person would sit down when we would go through anything that needed responding to - invitations or sorting out tickets for matches or whatever. And then once a month we were spend maybe an evening checking the direct debits and utility bills etc.
And what about the kind of domestic assistance you were getting?
Cooking - somebody was cooking me a meal a day, I can do my own snacks - beans on toast, hot drinks, pies, that sort of thing - but for a full balanced meal, which following my stroke is even more important now. The domestic cleaning - hoovering, dusting, cleaning the bathroom, the toilet. They say I could do it myself, how much bleach does a blind person put down a toilet before he knows he's cleaned it properly?
And what are your circumstances, I mean in terms of the level of your eyesight and are you living alone?
It's retinitis pigmentosa, or RP, and I've been registered blind. I have about light and dark differentials now but nothing more. Living alone - well I'm very lucky that I have a large group of friends who keep me well supplied with food and some of the people I used to pay - two of them - are still doing it voluntarily but of course that can't go on forever.
So what effect is it having on you and on your life?
Drastic, because of my stroke I'm much less mobile than I was so I can't get out so much. One of my people I've had to let go completely so I'm getting less social contact with other people. And every day is a struggle.
What about those people who say - and there may be some blind people who will say it - that blind people - they get rehabilitation, they cope around the home, perhaps we are not the group who is in highest need of this kind of help if money's scarce?
Well everybody wants their fair share. All I can say is that from my point of view I cannot cook, I've never had to cook and I don't particularly want to cook. Similarly with cleaning - yes I can push a hoover round and round the floor but I have no idea - no way of telling whether or not it's clean.
And how do you feel about the way this whole thing's been handled?
Rather disappointed, well extremely disappointed that a department that's supposed to be a social service - well the two words don't seem to apply.
Well we did of course ask Portsmouth Council for their side of this story but they say that they are unable to comment at the moment due to a current independent investigation into Nick Whyley's case. Although the RNIB, which is assisting Nick, tell us that there is no formal legal case pending.
Well, listening to that interview has been Anne Bristow. Anne is policy lead for the Committee on Sensory Impairment for the Association of Directors of Adult Social Services, she's also director of Adult and Community Services for the borough - London Borough of Barking and Dagenham.
Anne Bristow, is Nick's an isolated case, or is this happening a lot when it comes to visually impairment?
I think the challenge faced by adult social care nationally is that there is increasing numbers of authorities whose funding levels mean that they've changed the eligibility threshold and that means that some people, perhaps people with visual impairment but also with other disabilities, are no longer eligible for services they were one, two, three years ago.
Well I mean is it your experience, as chair of the Sensory Committee of ADASS, is it your impression that that is happening and so that effectively blindness or partial sight would not be regarded as something that required social care?
I don't think that's true, in the sense it doesn't require social care, but there is a task to be done to ensure that people recognise the impact that blindness has when an assessment is being carried out. And in some situations we are finding that staff who are not in specialist teams don't always realise the full impact. For example, the isolation, the depression, that someone might experience at the point of diagnosis.
So I mean what is the way round that? We know this morning that the minister has said he wants eligibility to be examined and he's given that job to the commission that's done this report, is this something that people like you will try to get on their agenda?
I think it's really important that if we review how eligibility criteria works we put forward for a number of groups, including visually impaired people, what are the key issues, what should the key triggers be that would affect different levels of eligibility.
And I mean what do you think are the issues here because as I said to Nick I think some people, perhaps particularly people who've been blind from birth or early childhood, people perhaps who've had good rehabilitation, will be saying things like well I can do all those things but I guess that doesn't apply to everyone, does it?
No it doesn't apply to everyone and the largest group of people who lose their sight are of course older people who may face a number of challenges, they may have some hearing loss, they may have physical frailties and they may be at a point in their lives when they find it harder to use some of the technological aids that are available today.
So what do you think now should happen, because my impression is that in some senses visually impaired people almost seem to have accepted this, you know that in the status quo they're simply going to lose out on the services they get?
Well I think there's a number of things. We need to recognise there has been a steady improvement in services overall over the last five years and that is recognised in the report today. Nationally we have been consulting on a draft vision strategy for the UK, a number of people with visual impairments made very useful comments on that and an action plan will flow from that. So I think we need to hope that the government will adopt it when the final strategy's available and then look at action plans that improve daily life for people with visual impairments.
It would be hard to convince someone like Nick Whyley that things had improved in the last five years.
I understand that when you look at a particular person's situation you may not get that but the Commission for Social Care Inspection have said very clearly that social services, up and down the country, have over the last five years delivered steady improvement.
Anne Bristow, thank you very much indeed. And we'd be interested to hear other people's experiences - good or bad - within their social services department.
Now, another report which has come to our attention is from the national computing and disability charity AbilityNet which claims that some of the world's most popular websites are excluding blind and partially-sighted people by making it virtually impossible for us even to log on, let alone participate.
The so called 'social-networking' sites, such as Facebook and MySpace, invite users to create their own virtual communities by sharing personal information with selected friends, current or long-lost. Well whether or not you think this is a good thing to do with your time or a waste of time, AbilityNet says that we've been denied the opportunity to make that decision for ourselves.
Well I'm joined by the report's author Kath Moonan, from AbilityNet and by our reporter Mani Djazmi.
Kath, first of all, what makes these sites so inaccessible to would-be blind and partially-sighted users?
Well Peter there's all sorts of reasons why users can't get on to the sites but one of the main ones that we've found is the capture graphics that you have to fill out as part of the registration process for e-mail or to set up an account on a social networking website. A capture graphic is an image of scrambled up letters that are used to basically make sure that hackers and malicious programs aren't trying to set up illegal accounts.
Right but the effect of that is in protecting their security they're excluding us in the process? So more from Kath in a while. Mani, I understand you've also had your own frustrations with logging onto websites in the past?
Yes about a year and a half ago I was trying to get tickets for the football World Cup in Germany and I needed to go through the capture procedure to do that and it frustrated the hell out of me because basically what I had to do was sit up all night constantly refreshing my computer but I couldn't do that because I needed a sighted person to be on standby just in case I got to the capture stage. Now someone else who's had similar frustrations to me but probably didn't want to start crying at the unfairness of it all is comedian Chris McCausland. Now he's totally blind and uses the screen reading software JAWS.
In the past I've tried to buy tickets for gigs and shows from places like Ticketmaster and they have an authorisation section that you have to go through to prove that you're an actual person sitting in front of a computer and not one of these little computer applications that ticket touts use to buy a thousand seats at Wembley Stadium and things like that. And to prove that you're human what they rely on is the fact that you can see the screen and tell them what the picture is on the screen. There's always an option click here if you have access problems, if you can't see what's on the screen. You click it and it gives you a phone number to phone which generally speaking doesn't open until a good few hours after the tickets have gone on sale so you've really got to take a gamble on whether the tickets are going to sell out in the first hour or two if it's somebody worth seeing and whether you want to just ignore the access requirements side of it or whether you want to hold out.
So what do you do then, do you just wait a couple of hours and give the phone line a ring and hope that there are still tickets on sale?
Generally speaking I weigh up how much I want to see the person and maybe get a friend to do it.
Right, well we've promised you a kind of preview of what this actually sounded like, so what do they sound like Mani?
Well as Kath says quite a lot of them are very indistinct and the other problem is that you can't actually replay them, you have to literally type in what you hear as you hear it. One of the people from whom we'll be hearing later is Mandy Clayton and what she does is actually record what the audio capture says on to a dictaphone, so she has some kind of record of it. I recorded one of the audio captures from Facebook which is actually quite clear actually, as it happens, and this is what it sounds like.
Audio Capture clip
I imagine you could get very tired of that. And it isn't just captures that cause problems is it Mani.
No that's right, I mean even if you negotiate the captures' obstacle there are other problems which can be encountered on various websites. Here's Chris McCausland again talking about the difficulties he's faced.
It's a lot better than it used to be but then again as technology improves to make things more accessible so does the material it's got to make accessible, so it always seems to be just moving slightly out of the reach of what the capabilities of accessible software are. On MySpace, for example, when you load a particular person's page they've had the option of uploading a song of their choice onto the website, so it's either going to be from their own band - which you can see the logic in that, what song they've made or maybe just from one of their favourite bands - and because JAWS speaks and you've got to be able to hear the audio if you actually want to read anything that's on the screen you've got to wait for the song to finish before - so you've actually got to wait about four or five minutes before you can actually go through the page and read what's on it. And every time you refresh that page the song starts again.
So as you can hear once the music kicks in then JAWS becomes almost impossible to hear and you just have to wait for that tune however long it is to finish before you can actually read what's on that web page. Val Slade is also someone who's encountered other difficulties than captures, she's partially sighted and uses the magnification software Zoomtext and for her the difficulty lies in an information overload.
Using Zoomtext you only see like a portion of the screen at any one time, so you've got to move around the screen looking for things and when you've got a website that's very packed with information on every page it's really difficult to find that information and you've got to have a lot of patience and really want to get on to that site or find that video on Utube and sometimes the easiest thing is to just pick up the phone and give someone a ring.
So Mani has anyone found a way round this?
Yes, Mandy Clayton, whom I mentioned earlier, has, she told me about a website called megaupload.com, which came up with a tailor-made solution to her registration difficulties.
I e-mailed them, told them I'm blind, told them I really want to use the site and that their discriminating if they don't make an alternative and they created for me a premium account which means that I can literally just use the site without putting in capture codes.
Mandy Clayton. Mani, thanks very much indeed.
Kath Moonan's still with us. So have you approached any of these websites that Mani's mentioned, or other ones, and how have they responded?
We haven't approached any of the websites as yet, though we hope that that's what'll happen next is that we'll be able to talk to them and give them some advice on how to improve some of these issues. We've been in contact with Yahoo, though, it's interesting because what Yahoo do is that because they've got so many different services available online they have one registration process, that if you register for that you can use flicker or Yahoo mail or anything like that. They did have an alternative to the capture which was that you contacted their customer services and what they've reported back to me that they're going to do is reinstall the audio capture, so that should be sorted out.
Kath Moonan thanks very much. And I gather the next project for AbilityNet is downloading music. Anyway thanks for that.
That's it for another week. As always we'd like your comments on anything you've heard in tonight's programme, including the business of getting on to these various social networks. We particularly welcome your experiences and advice also on how to deal with abuse, verbal or physical, because we're planning a special edition of In Touch looking at the subject in more detail. Our action line number is 0800 044 044 or you can e-mail us via the website. From me, Peter White, my producer Cheryl Gabriel, our guests and the rest of the team, goodbye.
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