Deafblindness
The final item of business is a members' business debate on motion S2M-1900, in the name of Margaret Mitchell, on deafblindness.
Motion debated,
That the Parliament recognises the European Parliament Declaration of Rights of Deafblind people which was formally adopted on 1 April 2004 and recognises deafblindness as a distinct disability separate from hearing or sight impairment; considers that more should be done to identify, correctly assess and provide appropriate services for this unique group who cannot automatically benefit from mainstream services or services for people who are either blind or deaf, and further considers that councils should make appropriate provision for this uniquely disadvantaged group, ensuring that they have the same provision of services as outlined in the guidance issued under section 7(1) of the Local Authority Social Services Act 1970 for England and Wales.
I am genuinely delighted to welcome to the Parliament the deafblind people who are in the public gallery and their supporters and communicators. I am only too well aware that it was not an easy journey for them to get here. It is an indication of the strength of their feeling that deafblindness be recognised as a distinct disability that they were prepared to use part of their precious allocation of guide-communicator time to come and listen to the debate. I am indebted to the Scottish Parliament's visitor and outreach services and corporate policy unit for their assistance with the interpreters, the seating arrangements and looking after the guide dogs. I am also extremely grateful to the 59 MSP colleagues from all parties who signed the motion.
Last year, the European Parliament issued a declaration that recognised deafblindness as a distinct disability and called on the institutions of the European Union and its member states to recognise and implement the rights of people who are deafblind, including the right to receive one-to-one support, where that is appropriate. In England and Wales, the European Parliament was preaching to the converted; guidance that was designed to address the needs of deafblind people was issued there four years ago in 2001, under section 7 of the Local Authority Social Services Act 1970.
That guidance contains important provisions. One crucial measure is that every local authority must identify the deafblind people in its area, which is important because many people are already deaf or blind and their hearing or sight is deteriorating. Early identification is vital and can make a huge difference to the quality of life that they can expect in the future. The guidance also requires local authorities to keep a record of all deafblind people, who will then be properly assessed and given access to skilled and trained communicators. That is the provision that we seek for deafblind people in Scotland.
However, I understand that despite lobbying for deafblindness to be recognised as a distinct disability from as far back as 1988, and despite the work of organisations such as the Royal National Institute of the Blind, the Royal National Institute for Deaf People, Deafblind UK and Sense International, the Executive has not implemented the equivalent of section 7 guidance. I also understand that such guidance would be implemented only if the Scottish Executive's action plan for all people who have a sensory impairment was fully in place and could be seen not to work for deafblind people.
The point is that deafblindness is not just another sensory impairment; it is a distinct disability that requires specialised services. For example, guide dogs for the deafblind are being given specific training as hearing dogs and dogs for the blind. Furthermore, delays mean that the action plan is not expected to take effect until 2006; it will thereafter be several years at least before it can be evaluated. That simply is not good enough. Action is required now to ensure that deafblind people in Scotland have access to the same level of service as those elsewhere in the United Kingdom. Without that level of service, the sense of isolation that a deafblind person experiences and the obstacles to everyday communication and access to services that they face will persist.
That was brought home to me by Drena O'Malley of Deafblind Scotland. I pay tribute to the work that she has done persistently for the deafblind over many years. She has worked tirelessly for deafblindness to be recognised as a disability in its own right and, more recently, for similar provisions to those under section 7 of the 1970 act to be implemented in Scotland. She told me of one elderly deafblind lady who was terminally ill in hospital and whose isolation can only be imagined. Neither her family nor the hospital staff could communicate with her, nor could she communicate with them, so she had no way of knowing why she was in hospital or what was wrong with her. With the assistance of Deafblind Scotland, a trained guide-communicator was able to communicate with her, which made an enormous difference to the final days of her life. If provisions similar to section 7 of the 1970 act were implemented, that gap in provision would not exist.
I put it to the minister that it is impossible to quantify at any level the value of an experience like that. To put it simply, here and now—coincidentally, on the fourth anniversary of the introduction of the section 7 guidance south of the border—the minister has the power to make a difference to the lives of not only those deafblind people who are listening to the debate, but the thousands of others throughout Scotland, many of whom are as yet unidentified. It would be a cruel irony indeed if devolution, rather than working for the benefit of Scottish people, were seen to have worked against deafblind people in Scotland by denying them access to services that should be theirs by right.
As chair of the Parliament's cross-party group on deafness, I am pleased to have the opportunity to raise the matter with the Scottish Executive once again. I welcome the interest that the debate has generated and—especially—the work that has been done by members and supporters of Deafblind Scotland who, despite the many difficulties that they face, have successfully lobbied MSPs who represent constituencies throughout Scotland. To visit an MSP's surgery is not always the easiest thing to do, even for somebody who does not have a sensory impairment, so I very much appreciate the efforts that deafblind people have made and the logistical difficulties that they faced when they came to state their case and highlight their needs to MSPs.
Labour women are often criticised for wearing red jackets—we seem to bring them out of the wardrobe en masse. I thank the Labour women who are wearing red today—including you, Presiding Officer—to demonstrate their support for and solidarity with deafblind people.
I know from meetings and discussions with Scottish Executive ministers past and present that they recognise that more has to be done to support people who have dual sensory impairment. I know that support needs to be in place to allow people who are living with deafblindness better quality of life, so that they can take part in family activities, communicate with others or even just have support to do what they want when they want. I do not believe that that is too much to ask—it should be expected. I know that ministers appreciate the needs of deafblind people, and that they want the required help and support to be put in place and I know that they take seriously the need to research fully the level of support that should be put in place.
Research is helpful to identify what is needed and to ensure that the Executive's next moves achieve maximum benefit for deafblind people. I do not just want to see a tartan ribbon round the existing English legislation, which is section 7 of the Local Authority Social Services Act 1970; rather, I want to see guidance that is tailored to meet the needs of Scottish people. I do not really care what legislation enables that objective.
At the lobby today, I spoke with people who said that this debate is just the start. This is not the start; I believe that we are on the home straight. I hope that the minister will be able to introduce the necessary guidelines to ensure equality of access to all services for deafblind people, so that they can enjoy life just as you or I can, Presiding Officer, with our senses of both sight and sound. I hope that we will hear news of that in the near future.
I thank Margaret Mitchell for securing the debate on a very important subject, and I associate myself with her words of welcome to the people from Deafblind Scotland who have made the journey here—quite a remarkable journey in some cases—and presented their case to us. I was talking earlier to somebody from the north of Scotland who made the journey here from Inverness. I am pleased to see all areas of Scotland being represented by the people who are visiting us.
I said that I was talking to somebody earlier; I should have said that I was attempting to communicate with somebody, but I was very much the deficient party in the dialogue. That person could communicate perfectly well with a communicator who had the necessary skills, but I was unable to access those skills, which made me feel quite bad. I can sign a little bit, but signing to somebody who is deaf but has full sight is quite different from communicating with somebody who is deaf and who also has a significant visual impairment. I felt very inadequate.
I will talk a little bit about the future for deafblind people in Scotland. The problems that they face are not going to go away. According to the background reading that I did prior to the debate, 2,800 people in Scotland are registered as deafblind, and that is probably very much an underestimate.
Sense Scotland supports about 400 children who have dual sensory impairment. As I know from my previous work as a community paediatrician, one reason why the problems will not go away is that children who survive extreme prematurity are at increased risk of being hearing impaired or visually impaired. They need specialised services. Children who have a hearing impairment, which—it is to be hoped—is nowadays diagnosed early when they are babies, will immediately get the appropriate services: teachers of the deaf will be provided and they will receive appropriate professional input. It is the same if is a child is diagnosed as having a visual impairment: a teacher of the visually impaired will go in and will build up a relationship with the child and family. When it comes to dual sensory impairment, the situation is quite different. A service package that is tailored to those children's needs simply does not exist and dual-impaired children do not fit neatly into one group or the other.
Normally, services for children are a lot better than those for adults. In the case of deafblind children, we must recognise that we are dealing with very specialised needs. If deafblind children and adults are to reach their full potential and to live lives that are as full as the lives that everybody in Scotland is entitled to, they need specialised services. We must examine provision of such services and the training of professionals who work with this group.
I was extremely impressed by the fluency and ease with which the communicators from Deafblind Scotland were able to converse with people to whom I had difficulty getting across what I wanted to say. I was the person who was deficient; the communicators were extremely skilled and my hat goes off to them. The work that they do is immensely valuable and should be supported fully. We are not talking about large numbers of people, but we are talking about a labour-intensive service. We have to pay the price for that, because it is what those people deserve.
The motion acknowledges the distinctiveness and unique problems of deafblindness and shows how Governments, through guidance, direct action and practical measures, should be implementing the European directive on deafblindness.
Existing provision seems to be targeted at deaf or blind persons, rather than at persons with the combination of the two conditions. A relatively small number of individuals are involved but, rather than being a problem, the numbers could allow solutions to be found more easily and scarce resources to be targeted more effectively to meet the particular and special needs that deafblind persons have.
British Sign Language and other specialist languages do not work for deafblind persons and other fundamental communication methods are required to break through barriers of understanding. Those methods are highly specialised and tactile and require great skill, training and patience in order to allow deafblind people to relate to the world around them.
Another problem is acquired deafblindness. Existing services might not pick up what can be a traumatic and devastating process for individuals as deterioration gradually overtakes the young as well as the elderly.
The most immediate daily practical problem is providing a companion to assist and guide people. Many guide-companions are here today; the work that they do should be acknowledged fully and applauded by us all.
I also commend to Parliament the Angus Community Care Charitable Trust housing project, in which each occupant has their own self-contained flat and share of a communal lounge, dining area and kitchen. They also receive therapy and support to enable them to settle in and learn independent living skills and to encourage their integration into the community. Lentlands Court is the result of a partnership between ACCCT, Angus Council and Sense Scotland.
To approach the problem properly, we will need a registration system, co-ordination between local authorities and record sharing. I commend to the Deputy Minister for Health and Community Care the joint working arrangements between Angus Council and NHS Tayside whereby education, social work, housing and health services are linked. Angus Council and Angus local health care co-operative are about to start sharing a joint headquarters. Support services, specialist training, single shared assessment procedures and a multi-agency review of audiology services are all part of a comprehensive and co-ordinated Angus strategy and show the way forward.
The debate should start people thinking and remind us all of the daily problems that are faced by this important small group of people. I ask the Scottish Government to build on local initiatives and ensure that our fellow citizens can truly be a part of our society and allow them to lead a fuller life in spite of all the problems they face.
The motion is a European—and now Scottish—statement of intent to encourage both recognition of and action for this distinct group of people. I congratulate Margaret Mitchell on it and wish the initiative well.
I, too, am pleased that the debate is being held. I congratulate Deafblind Scotland on the work that it does on behalf of its members. Without it, it is unlikely that we would be debating the issue and without the assistance of its guide-communicators, it is unlikely that many of those in the visitors gallery would be here.
It is difficult for any of us fully to comprehend what it is like to be deafblind. As we have heard from Deafblind Scotland, it is a unique and profound disadvantage from which there is no respite. As we learned from those whom we met today before the debate, the provision of guide-communicators is key in helping those with deafblindness to participate in society. Nowhere was that clearer to me than on a recent visit to a meeting of the Scottish advisory group on deafblindness. At that meeting, I was able to speak to deafblind people thanks to the work of their guide-communicators. I met Vicky, a constituent who is in the public gallery this evening. Through the assistance of the guide-communicators, she was able to discuss with me a problem that she was having in the local community. Without the support of her communicator, access to her local MSP—which is her right—would have been extremely difficult. Similarly, at a recent surgery, another of my constituents, William, who is also here today, was able, through his guide-communicator, to urge me to attend this debate. I have seen at first hand the difference that guide-communicators make to the lives of people throughout Scotland. However, Deafblind Scotland estimates that less than 10 per cent of Scotland's deafblind community has access to a guide-communicator.
In 2000, I addressed the healthy living for deafblind people forum in Glasgow and spoke about the good work that the Executive had done for people with sensory impairment. Following the establishment of the sensory impairment action plan, that work has been built on. However, it is vital that we are not complacent. We need to recognise the specific needs of deafblind people, particularly with regard to communication, and it is imperative, therefore, that we improve the way in which we identify people who suffer from deafblindness.
However, the Executive must be commended for the work that it has done since 2000, which we should not forget. I also commend the work that my colleagues Kate Maclean and Cathie Craigie have done over the years as conveners of the cross-party groups on visual impairment and deafness respectively. They worked with the Executive on the formation of the action plan.
I know that Deafblind Scotland has been campaigning for guidance similar to that which exists in England in the form of the section 7 guidance that Margaret Mitchell alluded to. I would like the deputy minister to tell us today that the Executive is committed to finding ways of assisting deafblind people in Scotland to achieve the recognition that they need and deserve.
I look forward to the minister's summing-up speech and hope that she will respond to the points that have been raised this evening. Deafblind people throughout Scotland deserve no less.
I congratulate Margaret Mitchell on securing the debate and on organising, with the Parliament, a way of enabling many carers and sufferers to attend the Parliament, which belongs to them every bit as much as it belongs to everyone else.
Last week, some of the MSPs who represent the Aberdeen area visited the Grampian Society for the Blind. While we were there, we were informed of a project that is taking place in the Forth Valley NHS Board area involving a shared facility for those who suffer from a visual impairment and those who suffer from deafblindness. That is the first such project that I have heard of and I gather that the societies for the blind are keen to work more closely with those who suffer from deafblindness and to share facilities, where they can.
Other members have already touched on some of the essential points regarding this issue. The main one, however, is early identification and full assessment. That full assessment of the individual must include an assessment of requirements for the carers. It is every bit as important that we look after the carers as well as the individuals who cannot look after themselves. I do not think that enough is done to remind people of what carers do in society. Obviously, that is an on-going project.
We need to train more guide-communicators. Equally, we have to ensure that public service agencies such as councils and even banks and post offices are able to assist deafblind people. It is not necessary for them to be able to do so directly, but they should be able to cope with people's carers and guide-communicators. Often, it is difficult for guide-communicators to do their work easily in confined spaces. It is essential that councils in Scotland start to come together with regard to this issue, whether they do so through the Scottish Executive or the Convention of Scottish Local Authorities.
I wish Deafblind Scotland every success in what it does and hope that it sends its message to some of the trusts for carers to ensure that they work with it as well. The area that we are discussing is specialised and I believe that deafblind people deserve the right to enjoy life as much as we do.
I congratulate Margaret Mitchell on securing a members' business debate on a subject of such importance. I was pleased to add my signature to her motion along with members of all parties. Such widespread cross-party support signifies the seriousness that members are right to attach to the concerns that the motion raises.
Like other members, I have been contacted by several constituents who are deafblind, who have urged me to support the motion and to do whatever I can to show my support for their legitimate demands. I am pleased to place on record my support for the motion and my support for the aims and objectives for the rights of deafblind people that are outlined in the motion.
I was grateful for the opportunity before the debate to meet briefly the group of 45 deafblind people from throughout Scotland, together with their guide-communicators. I welcome them as they follow the debate in the public gallery and in particular I welcome Evie from Glasgow Anniesland. I commend Deafblind Scotland for all that it has done to communicate the issue's seriousness to all MSPs and for all its hard work in organising today's events.
One constituent who contacted me made the point that section 7(1) of the Local Authority Social Services Act 1970 obliges only authorities in England and Wales to provide services for people in this uniquely disadvantaged group. As we have heard, such guidance does not apply north of the border. I admit that until my constituent approached me, I was wholly ignorant of that regrettable gap, which needs to be bridged quickly.
Deafblind Scotland told me that it wanted the Scottish Executive to acknowledge the European Parliament's written declaration, which recognises deafblindness as
"a distinct disability that is a combination of both sight and hearing impairments, which results in difficulties having access to information, communication and mobility"
and says
"that deafblind people should have the same rights as are enjoyed by all EU citizens; these should be enforced by appropriate legislation in each Member State".
I wholly agree.
Through Deafblind Scotland, deafblind people ask the Executive to act to introduce the same requirement as applies in England and Wales. They are right and the proposal is reasonable. I hope that the minister will offer some comfort on that point.
It strikes me that the duty to identify deafblind people is particularly important. Deafblind Scotland tells me that only eight people in my constituency have been assessed as having that distinct disability. Is that accurate? Authorities and service providers must adopt a much more proactive approach so that the true extent of the disability can be assessed and appropriate, discrete services can be provided for our fellow citizens, who require one-to-one support, assistive technology and rehabilitation. As citizens of Scotland, they deserve no less.
I hope that the Executive's response begins to recognise the need for specialist support that is enshrined in statute. Such an approach would ensure the delivery of such services to all deafblind people throughout Scotland.
I congratulate Margaret Mitchell on securing the debate and welcome everyone who is in the gallery. I believe that 120 people altogether are in the gallery; they include 45 deafblind people and their helpers who have come to listen to the debate.
I hope that the minister takes on board the fact that without communicators and guides, those deafblind people would not be at the debate. We appeal to the minister to ensure that communicator services are provided as quickly as possible. We must secure and expand communicator and guide services for deafblind people, as everyone has said.
We must have proper training and recognition, such as the declaration of rights that Margaret Mitchell mentioned. We must have the same provision of services as in England and Wales, which, unfortunately, we do not have.
I will concentrate on mental health services for deafblind people, which were brought to my attention by a petition that Drena O'Malley, Lilian Lawson and others supported and which the Public Petitions Committee has considered. England has three specialist centres for such services, but Scotland has only an out-patients clinic, which is held for one day a month in Edinburgh and in Glasgow and is under threat. I would like the Executive to look into that.
Drena O'Malley gave an example of what happens when a deafblind person is taken into a mental hospital or into care. She mentioned that getting the communication wrong can make a person respond in a strange way. One example was when someone told a man that his guide dogs would have to be put to sleep. The man could not quite comprehend the fact that they had to be put to sleep. The truth was that the dogs were not to be put to sleep; they were just to be given an anaesthetic to put them to sleep while they had their teeth taken out. They were not to be put down, but the distress that the man suffered was horrendous. That show why communication is vital.
I would like the minister to take on board the importance of the interpreting service for mental health services for deafblind people, which is under threat. It exists in England and Wales but, unfortunately, it does not exist in Scotland any more. I also appeal to the Executive to implement in Scotland the guidance that exists in England and Wales. That would go a long way to satisfying not just MSPs but the people who are in the public gallery tonight and everyone else who suffers from deafblindness.
Like other members, I congratulate Margaret Mitchell on securing the debate. I also recognise the work that my colleague Cathie Craigie has done over the years to bring the issue of deafblindness to the Parliament's attention, as well as the work of Kate Maclean in that regard. I am pleased that so many members of Deafblind Scotland are in the public gallery this evening. I commend the organisation for its continuing work and its active campaigning over the past few weeks.
The Equal Opportunities Committee is undertaking a disability inquiry this year in which it is looking at barriers and problems and identifying areas of good practice. It is opportune that this debate is taking place during that inquiry, as it can help to inform that process. I understand that Deafblind Scotland will participate in the inquiry's events that are taking place around Scotland.
The impairment of both a person's ability to hear and their ability to see has a profound impact on their life. Everyday activities that so many of us take for granted, such as communicating, travelling and accessing services, pose significant challenges for deafblind people. The potential for isolation and marginalisation is huge. The availability of relevant support services can make overcoming such challenges much easier; unfortunately, as members have said, such services are either not available to or not adequate for many deafblind and dual-sensory-impaired people in Scotland, and a one-size-fits-all approach to services is unacceptable.
The uniquely disabling nature of deafblindness means that mainstream services or those that are designed for people who are specifically deaf or blind may not be of automatic benefit. There are also different forms and causes of deafblindness. Some people are born deafblind, whereas others become deafblind for various reasons, and their needs and problems will, therefore, differ. It is important to remember that many deafblind people may not be totally deaf or totally blind and that people with deafblindness have varying skills, abilities, aspirations and requirements, just like any other group of people. Therefore, there is a need to provide sustained and cohesive services that are tailored to individuals and are not susceptible to the vagaries of a system that means that some people can access appropriate services while others cannot, depending on where they live. That is unacceptable.
Deafblind Scotland points out that, of its 700 members, fewer than 100 receive a guide-communicator service, although such a service can make a huge difference to the lives of many deafblind people and can help them to achieve a greater degree of independent living. Guide dogs, too, can help some people, and I understand that the first guide-and-hearing dog in Scotland is working in my constituency.
In response to a question that was posed by Cathie Craigie in December 2002, the then Deputy Minister for Health and Community Care said that there were no plans to issue guidance similar to that which exists in England. However, she gave assurances that the Executive was
"reviewing objectives, agreeing priorities and devising a strategy for future developments."—[Official Report, Written Answers, 12 December 2002; S1O-6069.]
Can the minister outline what progress has been made on that, and will she undertake to revisit the guidance issue? It seems that such action has been successful elsewhere.
I understand from a recent meeting with a constituent that the services and support that deafblind people receive can depend on assessment by one individual. When a person's quality of life is so dependent on such an assessment, it is vital that the assessors are trained consistently and to the highest possible standard. I ask for the minister's support for that.
It is clear that deafblind people in Scotland require better services than they receive currently and that there is a need for increased access to the services of professional guide-communicators. That would allow people to maximise their potential and lead independent lives.
I welcome Margaret Mitchell's motion on this very important issue. I was lucky enough to be present when the petition that Sandra White and others have mentioned was presented. Many of the issues that are being raised tonight were raised then. I welcome all the work that has been going on in the cross-party groups. I know that the issue will continue to be worked on.
I must apologise on two counts. First, I apologise that I was not able to meet the group of deafblind people prior to the debate, particularly Louise Wardlaw who has come in from Stirling. Secondly, I am sorry that I did not hear the red message. I am wearing pink and I hope that that is near enough to red; the group definitely has my support.
I also thank Deafblind Scotland for the briefing that it gave us, which was customised for each constituency—I now know that there are 15 deafblind people in Stirling. I have met the visually impaired group in Stirling several times, and many issues raised by the deafblind have been raised both by that group and by the hard of hearing people who also have a group in Stirling.
The three problems mentioned in the briefing are common: communication, mobility and access to information. My colleague Bill Butler spoke about the guide-communicator service, which is key if deafblind people are not to be so isolated. I know that Deafblind Scotland wants the service to be extended in Scotland and I hope that the Scottish Executive and the minister will be able to tell us how that can happen and how other very specialised provisions can be brought in to make sure that deafblind people are included in Scottish society.
Margaret Mitchell raised the key issues of early assessment and identification and getting on-going support, training and rehabilitation. Many people have spoken to me about associated mental health issues. I have already written to the minister to ask how mental health issues are being addressed, and she has very kindly written back to tell me how we are moving forward in that area.
David Davidson mentioned the sensory centre that is being developed in Camelon near Falkirk. That is a very good centre that will have a lot of resources when it is opened. However, there are real problems for deafblind and visually impaired people in getting to the centre. A lot of work has to be done on buddy and companion schemes and accessibility to information at railway stations so that that centre can be used effectively.
I look forward to the minister giving us positive messages about how deafblind people and other such groups can be helped in future.
Before I call Karen Whitefield, I invite a member to move a motion without notice to extend the debate.
Motion moved,
That, under Rule 8.14.3, the debate be extended until 6.03 pm.—[Cathie Craigie.]
Motion agreed to.
I welcome the opportunity to take part in tonight's important debate on Margaret Mitchell's motion. I join others in welcoming the deafblind people who have come to this evening's debate.
The provision of services for deafblind people is a matter that Cathie Craigie has ensured has remained high on the agenda of the cross-party group on deafness. I also congratulate Deafblind Scotland on the work that it has done to highlight the issue.
I will spend the little time that I have talking about guide-communicators for deafblind people. I was recently contacted by a deafblind constituent. When she attended my surgery, she communicated with the assistance of a guide-communicator. She made it clear how important her guide-communicator was in allowing her to take part in society and she explained how difficult the most basic task can be without a guide-communicator.
She also told me a dreadful story that illustrates the difficulties that deafblind people face when they do not have access to a guide-communicator. During her recent stay in hospital, medical staff wrongly assumed that she had learning disabilities, but it was difficult for her both to clarify that that was not the case and to state what her real medical needs were. She told me of the terrible sense of isolation that she has faced, both within hospital and in her own community, when she has not had access to a guide-communicator.
The evidence of my constituent has left me in absolutely no doubt that we must ensure that deafblind people have a right to the provision of a guide-communicator. Deafblind people must be given the opportunity to take part in the ordinary, day-to-day life that most of us take for granted and enjoy. Ordinary tasks such as shopping, visiting the doctor and using public transport can become next to impossible for deafblind people who do not have access to a guide-communicator. As a society, we rightly find that level of exclusion unacceptable for people who have other physical disabilities. We should find it equally unacceptable for those who are deafblind.
I commend the motion.
I thank Margaret Mitchell for lodging the motion and I congratulate her on securing this evening's members' business debate. I also thank colleagues from all parties in the chamber, but especially Kate Maclean and Cathie Craigie, who have made the issue a priority interest in their initiatives since they entered the Parliament.
As members have said, deafblindness is a unique and profound disadvantage from which there is no respite. The fact is that the deafblind people who are in the public gallery this evening are able to attend only because they have family members who can provide the necessary support or because they have access to the services of a guide-communicator.
For the more than 4,000 people who are estimated to require the support that Deafblind Scotland has identified, the guidance issued in England and Wales under section 7 of the Local Authority Social Services Act 1970 at least provides a framework within which they can try to ensure that more appropriate services are provided. However, those figures mean that there may be hundreds, if not thousands, of others who might have wanted to come to the Parliament this evening to express their view on how the quality and range of care services for those who have deafblindness can best be improved.
Many organisations have worked together since the creation of the Parliament to try to get the Executive to focus on the issue more appropriately. That has resulted in two major developments. First, the Executive has produced an action plan for community care services for people with a sensory impairment. Secondly, many members have been lobbied extremely effectively to be present at this evening's debate to voice the concerns of constituents who are often ignored.
Unlike Bill Butler, previously I had limited awareness of deafblindness, even though I spent some time serving in the community care section of the Executive. Often, members can think that such issues have already been tackled. Until we hear of a particular case, we often do not realise the importance of trying to ensure that much better services are provided.
Like many members, I have constituents present this evening. Michael Rooney and Christine Fry, who had a meeting with me in my office in Glasgow on Monday afternoon, have come through from Glasgow for today's debate, as have several others who contacted me. Their strong message to me was that they want the debate to be taken forward because they want even more confidence to be able to make a contribution. They were already confident individuals, but they felt frustrated that they could not maximise their contribution because of the limitations on support services. They want to establish more friendships and they want to ensure that services are much better.
Given the importance of having good guidelines, I hope that the minister will respond to the calls that have been made for such guidelines this evening. However, resources must follow on from those guidelines; outcomes must follow on from resources; and a reasonable and recognisable improvement in the quality of experience must follow on from outcomes.
One of the most emotional contributions that was made on Monday came from a constituent who said, "I don't want to be 50 before I'm 40." If we can recognise the power of that simple sentence in the actions that we take to improve services, we can genuinely make a difference.
I hope that, both tonight when the minister responds to the debate and in the weeks and months ahead, we will show that the Parliament can be used effectively when members demonstrate their support for an issue that has the demonstrable support of the public. We will then truly make this a Parliament of which the people of Scotland can be proud. I hope that those in Scotland with deafblindness will see a difference in the future and that the minister will respond positively in her closing speech.
I thank Margaret Mitchell for securing such an important debate. It is obvious that there is full cross-party support for her motion, and we all acknowledge the difficulties that people must have faced in getting here today.
Communication is very important to all of us, but we all understand how difficult it can be. Indeed, even good friends can quite often misunderstand each other's comments. However, things become more difficult when interpreters of any kind are involved. I have had some experience of that with refugees and, in my own practice, with deaf and blind people. I have to say that the most difficult experience was watching a woman who had been blind from birth—but who, through learning Braille, had become very capable—end up locked in her body and her house when she became totally deaf. She and her family found the situation most distressing. However, we know that many people suffer from varying degrees of blindness and deafness and in fact could be helped greatly by all that has been mentioned.
I was interested to learn from a Deafblind Scotland representative that, in my area, East Dunbartonshire Council has funded the establishment of a register. We know of 40 people who have this condition, but there could well be more. Most important of all, we need to find money for guide-communicators, because sometimes there are not enough to service an area, which means that they have to be brought in from all over the country at added cost. I think that the Parliament would support such a move.
When I spoke to her, the Deafblind Scotland representative must have been with a group, because she also told me that we need to remember that some people do not take up the service. Apparently, she was accompanied by five people. One, who was 40 years old, would not go out because she was too ashamed and thought that using a guide-communicator was like using a white stick. After all, many people do not like using sticks, never mind white ones. The representative said that at the moment there was no culture of providing such services and that, if they were more available, people would feel less ashamed about taking up such an offer. As a result, they would not be trapped in their houses and their bodies and would be able to have the best quality of life that they could have. Given that not many people are involved, such measures would not cost that much money. The Parliament certainly has the will to bring Scotland up to date with other parts of the UK and Europe.
I support Deafblind Scotland and everyone who has come to the chamber today. It must have been such an effort for them, and I think that they are all wonderful.
I thank the Deputy Presiding Officer for allowing me into the debate at a fairly late stage. Like other members, I commend Margaret Mitchell enormously for securing this debate, if for no other reason than it allows me to congratulate myself on outdoing every Labour woman—and indeed women of other parties—in the chamber. I am wearing not just something red but a red and white striped shirt. As I learned this afternoon, red and white are the defining colours of deafblindness.
I was not going to speak in this debate, but I was moved to do so by the attendance this afternoon of Mr Donnelly from Newton Stewart in the heart of my constituency. He and his guide-communicator have taken three hours to get here, and the fact that he and everyone else in the gallery have taken such trouble rather underlines to me the debate's importance.
I want to make only one substantive point; after all, every other member who has spoken has made extremely good points, none of which I disagree with. Several members have said that we are not talking about a lot of people. I hope that the number of people will in no way affect the Executive's response to any issue.
More important, I want to expand on the point Bill Butler and Dr Jean Turner made about the number of deafblind people in their constituencies and areas. Bill said that he had been told that eight deafblind people live in his constituency. Rather worryingly, I was told this afternoon that I have one and a half. There are actually three, the number being split between Dumfries and Galloway. I was also told that if recognition and registration were carried out in the same way in Scotland as they are south of the border, the total would be 60 such people in Dumfries and Galloway. If that kind of increase is applied across every constituency—where at present only one, two, three or eight people are registered—the total number becomes very significant. We are talking about a significant number of people who are being treated in a system that is considerably less robust than the system south of the border. That is neither just nor fair. It is not what most of us thought devolution was about.
In her speech, I sincerely hope that the minister will say explicitly that we will not tolerate the present situation for much longer.
I too would like to welcome the deafblind visitors to the Parliament, as well as their communicators and supporters. I look forward to meeting many of them after the debate.
I thank Margaret Mitchell for bringing her motion to the Parliament. I also congratulate and pay tribute to Cathie Craigie, Kate Maclean and others for their work on the cross-party group on deafness.
Let me state from the outset that we will issue statutory guidance to local authorities to improve services for sensory impaired people. That will include specific guidance on services for deafblind people. I recognise that for too long people with a sensory impairment, including those who are deafblind, have experienced difficulties accessing the community care services that they need. We acknowledge the very complex needs of deafblind people.
We know deafblindness affects a relatively small number of individuals from birth; the majority of deafblind people are, of course, older people who lose their hearing and sight as part of the aging process. Our most recent statistics show us that 84 per cent of all registered blind people who are also deaf are over the age of 65. Of course, that is only the number of people who are registered.
Services have to meet the needs of individuals who vary in age and degree of impairment, and who have differing circumstances. As I have said, there are people with very complex individual needs. That is why, in 2003, we began to work with sensory impaired people and the organisations that represent them to make things better.
We thank Deafblind Scotland for its involvement throughout the process. At the beginning, it told us how services needed to change. It set up meetings between the Executive and deafblind people so that we could hear at first hand what was needed. Since then, we have developed an action plan to bring about those changes. Deafblind Scotland is represented on the steering group to implement that work. Its chief executive, Drena O'Malley—to whom many speakers have paid tribute tonight—leads the work of the sub-group that is looking in detail at improving services for deafblind people. I would like to thank Drena O'Malley for that work.
I very much welcome the minister's announcements. Will she give me a little more detail? Will the guidance deal with identification, the keeping of a record, assessment and the access to guide-communicators that we seek?
The guidance for local authorities will be decided in conjunction with the people who are working on the sensory impairment action plan. I would hope that the guidance will be stronger than the current guidance in England. That is my strong intention.
We are proud of the sensory impairment action plan. It is a wide-ranging community care strategy for all sensory impaired people in Scotland, including those who are deafblind. We believe that the seven recommendations will improve access to community care services not just for deafblind people but for all sensory impaired people in Scotland.
Will the minister take an intervention?
I really will have to carry on, if that is all right. I have a lot still to say and I am conscious of the shortage of time.
The first recommendation is about getting better at collecting information on the number of, and the needs of, sensory impaired people, so that services can be planned and delivered more effectively. As part of that, we clearly need better information on the number of deafblind people. We need to work out how best to collect and use information that is currently held by a number of agencies and Government bodies for differing purposes. We also need deafblind people, and their families and carers, to feel empowered to approach local authorities, make themselves known and ask for the services they need. It will be important for us to find out about their needs.
Good assessment is critical in meeting individual need. The action plan recognises that and has already changed the assessment process to ensure that sensory loss is picked up in older people. That will be extended to other care groups as the changes to the single shared assessment are rolled out. That means that the worker carrying out the assessment needs to recognise when a more specialised assessment is needed and to make that happen. That could mean having someone trained in meeting the specific needs of deafblind people and undertaking a joint assessment. For others, it will mean having a guide-communicator alongside the person being assessed to assist in interpreting their wishes. We must ensure that we are meeting the needs of all people.
Another recommendation is that service standards will be produced that will make it clear what deafblind people are entitled to expect. The Social Work Inspection Agency will inspect against those standards, which are currently in development, to see how effective they are.
There are several other recommendations, but I would like to cover just two, briefly, before I run out of time. We recognise that having a competent workforce is crucial. That is why we are collecting information on all the courses that are available to see what works and to disseminate good practice to local authorities, the voluntary sector, carers and everyone who uses the services.
The last recommendation to which I would like to draw members' attention concerns the groundbreaking research that is being undertaken to identify what needs to change in community care services so that specialist needs are met.
I hope that, now that I have gone through the action plan, members will see that we intend to go further than the scope of the guidance that is in place in England. It is an inclusive plan and we believe that we are laying the foundations of improved services for people whom we know have been neglected in the past. The action plan and the research that flows from it will further inform our next steps. We will make changes to the way in which services are delivered at the moment and we will issue statutory guidance to local authorities inviting them to implement the changes.
Changes will not happen overnight, and I ask people to continue to work with us in ensuring that quality services are developed to meet the individual needs of everybody who is deafblind. The recommendations in the action plan are the first step to identifying, correctly assessing and providing appropriate services for a unique group of people. They are entitled to nothing less.
Meeting closed at 18:03.