Learning Disability Review
The next item of business is motion S1M-966, in the name of Iain Gray, on the learning disability review, and an amendment to that motion. I invite members who wish to speak in the debate to press their request-to-speak buttons now.
We spoke about learning disabilities recently, in the debate on community care, but learning disabilities have not had their due place on the community care agenda. As politicians, we must take responsibility for that, or for some of it at least. I hope, therefore, that members will value the opportunity to debate this matter in its own right today.
People with a learning disability will continue to be denied the fullness of citizenship if we do not change the way in which we view them. We must overcome the public's negative views, professionals must manage less and listen more and attitudes must change. Politicians must show a lead, which is why it is important to bring the voices, the aspirations and even the dreams of people with learning disabilities to our Parliament for the first time. For too long, learning disabilities have been no one's priority; the learning disability review is about changing that.
Over the past 20 years, most European countries have been developing new, modern and effective services and support for people with a learning disability. Indeed, much progress has been made in Scotland, where we have some fine examples of innovative services. More than 4,000 fewer people live in long-stay institutions, but a further 2,000 Scots could live more independently. In the 21st century, no one should be in hospital because they have a learning disability.
A learning disability is not an illness. That is the headline of the review, but at its core are values the Parliament holds high. It puts people first. It promotes social inclusion, equality and fairness, and the opportunity for people to improve themselves through continuous learning. Sadly, those are the very qualities that people with learning disabilities have often not enjoyed to date.
Anyone who thinks that the review is just another glossy document is badly mistaken. It reflects strongly the experiences of people throughout the country, many of whom have never before have been asked what they think, feel or want. It is the authentic and powerful voice of people with learning disabilities. No one who was at the launch of the review a month ago can deny that.
The previous review of services for people with learning disabilities in Scotland was carried out more than 20 years ago and addressed the balance between hospital and community care. This review, too, began by looking at those services, but it changed course almost immediately, to concentrate instead on people's lives and lifestyles. It recognised that people's lives are what matters and that services must support them. That was a watershed. It conditioned the review and the report, and I believe that it must serve as an example to this Parliament for its future thinking.
The review involved people who use services, and their carers. It involved visits, speaking directly to people in their homes and holding seminars. It also had a well used website. Users and carers were members of the national steering group and they conducted their own roadshows to bring out views and opinions. I took part in some of the visits and attended some of the conferences. I also held an interview on the website. I wanted to see and hear what people thought and felt, and that was made powerfully clear to me.
The most potent message of what is possible always comes through personal example. I think of one young woman, whom I met in Aberdeen, and her mother. They provided an outstanding example of the approach that we want following the review. The young woman has a learning disability and a physical disability. She uses a wheelchair, electronic communication and a carer whom she interviewed and appointed herself. Through her care manager, Grampian Service Brokerage, her family and, above all, her determination, she attends college, swims, goes to aromatherapy classes and works for Asda part time. It is no special job—she monitors and controls the closed-circuit television, which is bad news for shoplifters as she is particularly adept at tracking them. The one part of the job that she cannot do, her carer does. Asda gets a valued worker, she gets the chance to earn a proper wage and the shoplifters get their collar felt. A job, a home, some leisure time, a life—that is what "The same as you?" means.
There are 29 recommendations in the report and they all contribute in some way to what people want. People want more control and say over their lives. The recommendations would strengthen advocacy services and extend people's entitlement to direct payments. People want better-quality, more consistent and more person-centred care and support.
Under the recommendations, there would be a new type of local area co-ordinator to organise support in the community; personal life plans for everyone with a learning disability who wants one; and more help and support through short breaks. People want new opportunities that support inclusion. We need modernised day services that focus on personal development and employment. We want people to have more mainstream and less specialist supports, and more integrated and better-developed community-based services that will lead to the closure of the remaining long-stay hospitals by 2005.
Above all, people want a new vision for learning disability generally. We propose, therefore, to set up a new Scottish centre for learning disabilities. It would be a resource to support users, carers and agencies, to promote public awareness and to tackle discrimination and stigma. We also propose to set up a national network for people with an autistic spectrum disorder and to introduce partnership in practice agreements that would give a clear focus for local authorities and health boards when working together to develop services. Finally, we propose to create a change fund, to help local authorities move quickly towards the vision for people with learning disabilities.
We have sent out about 7,000 copies of the report—I had some trouble getting one for myself today—and are asking for comments on its implementation by the end of August. I make no apologies for the review taking 18 months to complete. The effort to ensure that it was accessible and inclusive was important. I make no apology for now ensuring there is the time for a wide constituency to hear and engage with its conclusions.
I attach considerable importance to the views of the Parliament's committees—the Health and Community Care Committee, the Social Inclusion, Housing and Voluntary Sector Committee and the Education and Lifelong Learning Committee—and that is why I am pleased that the whole Parliament has this opportunity to discuss the recommendations. The review is the start of a 10-year journey. I want to go forward with a fair wind from this chamber.
We cannot stand still and wait. I intend to keep up the momentum. We will make an early start on setting up the Scottish centre. We expect to go out to tender soon and it is my aim to have the centre up and running this autumn. The centre is pivotal to reshaping the future. It is a key marker of our commitment to the vision of the review. I intend to entrench the user and carer perspective, which has run through the process of the review, in the work and management of the centre, which will be a key player in making a reality of the recommendations.
We have begun discussions with some of the key organisations that will be involved in implementing specific recommendations. The need for new resources to implement the review as a whole, particularly through the change fund, is being considered carefully in the current spending review. Those who might try to argue that nothing can happen without new resources are simply wrong. We expect local authorities and health boards, with their local partners, to make an early start on identifying where they can do better within the existing pool of resources.
Local authorities and health boards spend more than £270 million a year—a substantial amount—on direct services for people with a learning disability. Too much of that—37 per cent—is tied up in bricks and mortar and in services that lack the focus that this review demands. The review makes very clear that the key resource issue is the priority given to people with learning disabilities and what it is spent on. That has to change if any increase in resources is to deliver what we want. The review indicates how we can spend better.
"The same as you?" can move learning disabilities in Scotland from negative to positive, from policy drift to a vision for the future, from people with learning disabilities being ignored to their being valued.
The solution is not easy, but in one sense it is as simple as this: someone I know who worked years ago in a long-stay hospital told me that she met an ex-patient whom she had known as one man in a ward of many. She said hello and asked what he was doing these days. The first thing he said was, "I don't live in Gogarburn any more and I get to choose what I do." That's what "The same as you?" means.
This Parliament is accountable to the people of Scotland. They include people with learning disabilities who have made clear what they need and want. I hope that we can embrace their vision, endorse these recommendations and discuss how we deliver them.
I move,
That the Parliament notes that the report of the Learning Disability Review, The same as you?, was issued on 11 May to a wide range of consultees, calls for the fullest possible debate on how its recommendations should be implemented, and looks forward to a future where all relevant agencies work together with people with learning disabilities to ensure that they can live as full lives as possible in our communities.
I have pleasure in moving the amendment, but I should perhaps start by dispelling the confusion about why I am moving it and my boss, Kay Ullrich, is not. I, too, was confused, but that was before I read the document. I can only assume that Ms Ullrich is attempting to preserve her reputation as a determined opponent of the Executive. I think that this is an excellent document and that there is a lot in it that must be praised. I have great pleasure in saying that the SNP will provide the fair wind that the minister is looking for from this chamber.
This is an honest, radical document and it sets out, on the basis of need, the way must go forward. I hope that the minister will take what I have to say by way of criticism of some of the areas that we need to tighten as constructive. As the first review in 20 years, this is a ground-breaking debate and a ground-breaking document. We welcome the recommendations on direct payments, the new Scottish centre for learning disability, the action on autism and the aspects of the report that relate to the promotion of independent advocates. I know that Richard Simpson has been pursuing that in a different environment. We all welcome it. We certainly welcome the fact that the report puts people with learning disabilities right at the heart of an equality agenda. I am sure that there will not be a voice of dissent in the debate today.
So why lodge the amendment? The simple reason is that the motion does not adequately reflect what the report says. There are real criticisms of the current set-up in the report, which the Parliament should reflect. It is important that the minister knows that the Scottish National Party will vote for this amendment. Should that fail, we will vote for his motion for the simple reason that we want to give the report a fair wind. However, I ask him to reflect that the amendment is carefully worded; he will find that it chimes with much of what is in the report.
On the major issue of funding, the minister is right to say that this is not only about new resources—but it is also about new resources. With the current resources, we should, we can and we will do better, but if the minister considers the report he will find that the current status of funding needs a radical re-think. It contrasts the per capita spend on learning disabilities: Wales, £63; England, £59; Scotland, £54.
The minister referred to the vast disparity in funding across Scotland: up to 37 per cent. It is no surprise that there is such divergence; some areas are deprived and in others—rural communities—access to services is more expensive. There is an honest appraisal of that harsh background in the report, but no Executive action has followed identification of that problem.
What the report says about future funding proposals is interesting. I make no apology for quoting it at length. It says:
"Local authorities, for their own services and those they commission from . . . the voluntary sector, will not be able to manage and pay for old and new services at the same time. They will need help with the costs of creating new services while keeping the old ones going until it is appropriate to close them down. Funding is also needed to re-direct existing services, develop new ones and to pay for training to improve the skills of staff."
It goes on to advocate more funding for independent advocacy and the skills change that is needed, but it does not tell us any of the detail on the change fund. It does not give us a time scale for implementation, nor does it give any indication of the level of new resources that is needed and whether it will be matched funding—as was the case with the carers strategy—or new funding. We need to know that before we can go forward.
It is not that we are against the principle of what is being proposed; we are very much behind it, but it is impossible to gauge the effectiveness of the proposal until we see the real resources—the new money—that are being put behind it. It is fair to say that we agree in principle, but we remain in the dark over the practice.
There is a central tension in the document between the role of central Government and the role of health boards and local authorities. To know whether the new obligations and the new responsibilities being placed on local authorities and health boards are fair, we need to know whether the resource transfer will take place as well. That remains an issue throughout the health service.
My amendment calls for better consideration of benefits, which, it is fair to say, the report highlights. The report also refers to flaws in the independent living fund system and the inability to deliver anything other than pilot schemes on the new deal for disabled people. I add to that invalid care allowance, which does not apply to people over the age of 65 or to people who earn more than £50. Nor does it apply if people are in full-time training or education. It is certainly not additional money; once people reach pension age, they do not receive it.
Those are all real issues and I am sure that there is consensus in the chamber for addressing them. However, I suggest to the minister that we need to toughen the report substantially. It recommends:
"The Scottish Executive should consider raising, with the Department of Social Security, specific areas of concern related to benefits and support for people with learning disabilities."
Let us be a bit bolder. Let us say that the Parliament requires the Scottish Executive to raise all these issues with the DSS on behalf of the people of Scotland—on behalf of those with learning disabilities. The document has highlighted a serious problem, but the recommendation that flows from it is not necessarily tough enough, nor does it get to the heart of the problem.
I have two other small points, which I shall put as questions to the minister, rather than criticisms. I hope that he will take them in that spirit. My first question concerns the proposal for partnership in practice. We have had HIPs and TIPs and now we have PIPs—I do not know where this will end; there are only a few more letters to go. The document says that the PIPs will require three years of funding, starting from June 2001. Is that possible in the Executive, local authority and health board spending plans? In the Health and Community Care Committee we came up against the issue of whether long-term financial planning is possible within the current strictures. I would welcome his reassurances on that front.
My other question is about local area co-ordinators. The report cites an example from Western Australia as a good way forward. We all support the move towards mainstreaming people with disabilities, so why should local area co-ordinators be under the auspices of the local health care co-operative? I suggest that that should be reconsidered.
The SNP wishes the Executive well with this strategy. We support the report as there is a lot in it that is very good. However, we ask ministers to take further action on the specific points that I have raised.
I move amendment S1M-966.1, to leave out from "and" to end and insert:
"recognises the difficulties faced by local authorities as a result of underfunding; calls upon the Scottish Executive to press for a review of the social security and benefits systems to provide greater support to those with learning disabilities and welcomes the opportunity for inter-agency co-operation to ensure that those with learning disabilities are treated with equality and respect."
I welcome the motion and the tenor of the minister's speech. The motion calls on the Parliament to note the report of the learning disability review, "The same as you?", to progress towards implementing the recommendations and to look forward to
"a future where all relevant agencies work together with people with learning disabilities to ensure that they can live as full lives as possible".
Like the minister, I welcome this historic occasion. Today is the day on which a glossy brochure became reality and I truly welcome that. I have been critical of all the glossy brochures, but I endorse the practical approaches outlined in this one.
The review continues the reform of services for people with learning disabilities, building on the community care reforms put in place by the Conservative Government. The number of patients with learning disabilities in long-stay hospitals has fallen from 6,500 in 1980 to just over 2,000 now. There is a need to increase confidence in our service so that it does not reduce to containment or a form of babysitting, and so that services are provided to suit the needs of users.
Of course, all the recommendations cannot be achieved overnight, but there is no doubt that many of the 29 recommendations can be progressed by good practice and improved practice. Section 50 of chapter 2 gives a good example of that—the bringing together of the Scottish Society for Autism and the National Autistic Society for a managed clinical network.
This debate does not deal only with today's problems; it puts in place mechanisms to avoid and address future problems. Some points are crucial to the whole debate. First, we need more and continued research on the increase in the number of people with disabilities. The number has been rising at a rate of more than 1 per cent a year for more than 35 years now, and I am pleased that the Health and Community Care Committee is pursuing and investigating the alleged link between the measles, mumps and rubella vaccine and autism. I would welcome further similar research.
The key to successful implementation of the recommendations in the review document is, as I have said before in the chamber, assessment. It must be extended where appropriate and carried out as early as possible so that those in need of support get help that is uniquely tailored to their needs and adequately funded. Not only will assessment lead to better quality health care, it will lead to savings elsewhere in health and education, as the minister said in his opening remarks.
A friend of mine has a son with Asperger's syndrome. He was not assessed until he was over 18. They thought he was just a very difficult child who could not make contact with others. Once they decided that he had Asperger's syndrome and his condition was addressed, he flourished. He is now getting a job. It may be a tedious job, but children with Asperger's syndrome have talents that, once recognised, can help them to find fulfilment and independence and to be confident in their own abilities.
I also endorse recommendation 28, which suggests research into the number of people with learning disabilities in prison or in secure accommodation—they also have the right to be assessed and appropriately supported.
Prisoners' health care needs should not be judged by their offences—they have every right to assessment, care and support as people. I am delighted that that is included in the recommendations. Assessment is the key to successfully addressing individual needs and providing appropriate health and educational support as well as the full range of services to fulfil present and future needs and to make personal life plans workable.
My next point is the partnership in practice—the PIPs Duncan Hamilton mentioned—to achieve integration and assessment. There is a need to address current practice and current levels of support and care positively. In requiring agencies to work together, it is not good enough, when the quality of care is reported to fall well beneath the minimum standards, that councillors turn round and state that they can look after their own centres. That happened recently in Highland. I hope that in future councils will be more open and accountable, will listen to and address problems and will improve care rather than defend the indefensible. I welcome the new partnerships.
We also welcome the direct payments, which will give people and carers more control over their care, freedom and choice to buy services. The change fund must be open and transparent. We must be able to track the money to the provision of services. We have had a bad experience in resource transfer in relation to care of the elderly, as Duncan Hamilton mentioned. I look forward to a more open and transparent relationship in future.
Finally, while it would be easy to pick out preferred recommendations, I especially like recommendation 21, which states:
"There should be a long-term aim to promote public awareness about learning disabilities and including people with disabilities in the community."
I believe that we have progressed that by using the title "The same as you?" and I look forward to the new centre for learning disability being set up this autumn because I believe that it will take forward better understanding in a move towards sensitivity, greater tolerance and greater inclusion of people with learning disabilities.
Like members who have spoken already, I welcome the learning disabilities services review. It is the first major policy initiative aimed at learning disabilities services for 20 years.
I was pleased to join Iain Gray, Peter Peacock and Mary Mulligan, the convener of the Education, Culture and Sport Committee, at the launch of "The same as you?" last month. It was a joyful occasion, mainly—I mean no disrespect to my colleagues—due to the input of people with learning disabilities who were at that occasion. They have waited a long time for this important review.
I pay tribute to the hundreds of people who have played a part in bringing this review together. Iain Gray has had an open ear. He has also had an open heart. It is an honest document, as Duncan Hamilton said. I will refer to his comments later in my speech. It is fundamentally important that the people who use the services were at the heart of this document. They were asked what they wanted and they stated what they wanted. What they say is that they want a life, just like the rest of us.
The title "The same as you?" is a challenge to us all. It is a challenge about how we view and interrelate with the 120,000 people in Scotland who have a learning disability. It is a challenge to all of us who want an inclusive Scotland in which all are valued, supported and recognised and in which all people are given opportunities to learn throughout life, to access health and social services as required, to earn a living and, crucially, to live in a decent home in their own community, not incarcerated or institutionalised in long-stay hospitals.
When we can see the title of this document as a statement, not as a question or a plea, we will be on our way to building the new society that we all want. The review goes some way towards achieving that, but it is critical that the fine words, to which we all sign up, and the hopes and aspirations of people with learning disabilities that the document represents, leave the pages of the document and are put swiftly into action. That is why I welcome the targets the Executive has set itself, as well as the partnership in practice agreements, which are to be drawn up between councils and health boards and implemented within the year. There will be a new centre for learning disabilities within a matter of months. I hope that we can achieve the aims of the document well within the overall time frame of 10 years.
Funding is central to making the provisions in the document work. Scotland spends £54 per person on learning disability services; England spends £59 per person; the Welsh spend £63 per person. We still have a greater proportion of spending tied up in hospitals—37 per cent compared with England's 15 per cent. Lothian Health has a good reputation in the field, having managed the closure of Gogarburn hospital in my constituency with some success, but the picture across the country is patchy. I welcome the announcement of a change fund to assist local authorities in shifting resources, to help put the recommendations into practice and, crucially, to move funds from long-stay hospital settings to services in the community.
This is not all about new money; we can do much better with the £275 million that is already spent every year on services. We can use the money more constructively; we can listen to what people want; and we can make changes.
I found the documents very readable: whoever wrote them has to be congratulated on the way they were written. I particularly like the booklet, which I think was aimed at people with learning disabilities—it was pitched at just the right level for me by midnight last night.
The document says that the change fund will be extra, new money. We need some further information from the Deputy Minister for Community Care about the amount of that new money and about how the change fund will work in practice. With the correct funding mechanisms, personal life plans will become a reality. If proper funding and funding mechanisms are not provided, personal life plans will be a cruel joke, made all the worse by the hopes and aspirations behind the document.
With correct funding mechanisms, local authorities and health boards will be able to work productively in partnership, and with correct funding, local area co-ordinators will be able to support the 50 individuals in their care without frustration and without failure. The change fund as outlined in the review needs hard cash if it is not to go the same way as other aspects of care in the community, or the joint investment fund, which we have already heard about.
I welcome the establishment of local area co-ordinators for learning disabilities as a means of facilitating joint working and of assisting individuals and their families and carers in accessing information and the best, most appropriate, services. That will be particularly important when individuals have access to direct payments, which I welcome, and are able to make their own choices about how they wish to make the best use of services.
The review acknowledges points of crisis and transition in the lives of people with learning disabilities and personal life plans may well assist in the management of those periods of transition. It is essential that we help people manage transition from school to adult life by giving access to lifelong learning and work; help them deal with points of crisis through support to carers and respite services; and help them deal with other changes or transition, such as the death of a parent or carer, or the move from a long-stay facility or long-established day centre—of which I have some experience from my former life as a councillor.
As Duncan Hamilton noted, "The same as you?" is an honest document. It states that services for people with learning disabilities could be much better. I welcome the review as a major contribution towards achieving that improvement and I hope that it receives support from across the chamber. More important, I hope that it receives support from all the people of Scotland. Delivering a better life for people with learning disabilities and treating them with proper respect remains a challenge for us all.
The debate is now open. We have 10 speakers and 35 minutes. The maximum length of speeches is therefore four minutes.
I am grateful for the opportunity to take part in this debate and to welcome this long overdue review. For more than 20 years, the treatment of people with learning disabilities has been in a dark age; they have been hidden away in establishments with no opportunity to make their own decisions or to be part of their own community.
People with learning disabilities are as much a part of my community as I am and can play as active a role in enhancing that community—they just need to be given the opportunity to do so. Several things need to be in place for them to have that opportunity. They need information and services to be available when they need them, not when someone else thinks they need them or when they can be bothered to supply them. They and their families must have access to information and support and must be directly involved in decisions about care. Most important, they must be able to make their own choices about their lifestyle and they must be given support for independent living when they want it.
I give the example of one of my constituents, Patrick. For more than two years, Patrick and his mother were concerned about the care that he was receiving. My colleague, Des Browne MP—who dealt with the case before the advent of the Scottish Parliament—and I have been impressed by the commitment of Patrick's mother to his well-being and by her certainty that her son was inappropriately placed in a long-stay hospital, a view that was shared by the medics. Despite that, it took until March this year for a solution to be found. At last, a partnership programme was agreed between East Ayrshire Council, Ayrshire and Arran Health Board, Ayrshire and Arran Primary Care NHS Trust and Horizon Housing Association to provide a supported tenancy in my constituency.
Patrick has been central in designing his living space and he and his mother have been an essential part of the development of his lifestyle plan. The development of the new partnership has given Patrick the dignity and independence that he needs and deserves. I invite the minister to visit to see at first hand how the review will change the life of Patrick and so many others. How many other Patricks are out there, struggling with their families to take back control of their lives from bureaucracies that jealously guard their profession and have never heard of partnership working? Partnership is the key to the successful development of the review.
I have shared with members an example of how joined-up provision of services can work for the well-being of our constituents. The review summary says:
"Members of the Scottish Parliament will read the report and decide if they agree with the ideas. If they do, then they can help make them happen."
This long-awaited review commits the Executive to ensuring that there are no more Patricks and their families, who have years taken out of their lives trying to secure rights that we all take for granted.
I have read the report. I agree with the ideas. Staff will embrace the changes and will transfer their skills to benefit clients. I have worked and will continue to work in partnership to make that happen. I ask the Parliament to endorse the report.
I add my congratulations to the Executive and, in particular, to the minister on producing the document "The same as you?" I also congratulate all those who contributed to the document. I acknowledge that the Executive is committed to bringing people with learning disabilities out of the shadows and giving them their place, if not in the sun, certainly in society, where they belong.
I want to raise three specific issues, which may not have been addressed fully or at all in the report. The first is housing. People who rent a house have a secure, assured or short-term tenancy. However, only a small minority of people living in supported accommodation have such tenancies. Instead, they have occupancy agreements, which offer many fewer rights and are intertwined with the relationship between the occupant and the service provider. A 1999 Scottish Homes research report concluded:
"There is nothing in the nature of supported accommodation which prevents the legal use of tenancies even in shared accommodation or dual agency situations."
However, only 16 per cent of people in supported accommodation have assured or short-term tenancies. In other words, 84 per cent of people in supported accommodation have fewer rights than people in mainstream housing. That is not acceptable.
If we want people with learning difficulties to be the same as you—as the document has it—or the same as me, we must address the most basic issues: their right to a home and to legal rights. They must have no less protection than anyone else renting a home. A housing bill is soon to be introduced in the Scottish Parliament. I understand that, although there is to be a single social tenancy, the specific issue of supported tenancies will not be addressed. I would be grateful for an assurance from the minister that he will discuss that with the Minister for Communities as a matter of urgency.
My second point is about the quality of care for people with learning disabilities. The SNP has long supported the concept of community care. I share the joy of those who have escaped incarceration in long-stay hospitals and are now, perhaps for the first time, enjoying a quality of life that was unthinkable only a few years ago. However, I am concerned that nurses qualified in caring for people with learning disabilities are finding it difficult to gain employment because local authorities and the voluntary sector are employing social workers and care workers in community homes, rather than using the much-needed expertise that is available. I know that resources are limited, but the many welcome recommendations in the report cannot be implemented on the cheap or by reducing the level of expertise.
Finally, I come to a problem that has not been sufficiently addressed—the facilities available to people who have what is referred to as challenging behaviour. There is a real need for specialised support for that group of people. In particular, I understand that in most health board areas, no accommodation exists for youngsters with learning difficulties who are sexual offenders. That is something that we should address honestly.
This is the first review to be undertaken in 20 years. It will bring the learning difficulties service in Scotland up to date. However, I urge the minister to go further and to ensure that the service is the envy of the rest of Europe.
I welcome Tricia Marwick's speech, which was excellent. The Health and Community Care Committee took evidence from the Scottish Federation of Housing Associations, who referred to the specific housing issue that she raised. The SFHA said that good practice was to have full tenancies and not occupancies. That is something that will be addressed.
I understand what Dr Simpson says about good practice; I welcome that and I know that great strides have been made. However, good practice is not the same as a legal right, which is fundamental.
I accept that.
I had the honour of serving on the programme planning group sub-committee that produced the Peters report, 20 years ago—that dates me. Although people talk about moving out of a dark time, it should be recognised that there has been accelerating change over the past 20 years. The closure of Gogarburn hospital, Lennox Castle and Lynbank hospital and the proposed closure of the Royal Scottish National Hospital are all testament to the fact that there has been some development, although not enough. The Executive report is welcome because it has involved users, which is a significant change.
It is particularly important that the bridging funding is available when hospitals are being closed. That was the problem with the Peters report. The bridging funding was not available to allow the services in the community to develop before units were closed. The funding that has just been given to RSNH for that purpose is particularly welcome.
The second issue that I want to address is that of resource transfer. Information from the Accounts Commission and evidence given to the Health and Community Care Committee on community care have shown that there is massive variation in the extent to which resources, beyond the initial bridging funds, are transferred on closure. Until now, the health boards have been required to track the resources that they transferred. The Accounts Commission has indicated that that is extremely difficult, if not impossible. The Sutherland report has also suggested that, at least in England and Wales, there has been a substantial diversion of funds into other priorities. I will be making a submission in response to "The same as you?" on that subject.
I hope that the minister will consider ensuring that 100 per cent of the resources to be transferred are identified and agreed by all the parties to the partnership in progress. This should be not simply be a matter of the local authority deciding on the spend or the health board deciding on the moneys available; those organisations, with voluntary organisations, user groups, users themselves and housing associations should collectively decide on the best use to which the money should be put. In that respect, I refer members to the Scottish Society for Autism, which is based in my constituency. It is regarded as a centre of excellence and should be involved in that process.
The final area that I wish to address is advocacy, a subject in which, as Duncan Hamilton kindly mentioned in his speech, I have been interested. Advocacy is mentioned time and again in the report. I welcome the fact that planning guidance on advocacy is already in place. I particularly welcome the fact that the new centre for learning disability will help in the further development of advocacy. I recommend to the minister the model of the centre for social research on dementia at the University of Stirling in my constituency, which has had, and is having, a substantial effect on another neglected area—dementia.
In conclusion, I refer to a subject that Irene Oldfather would have mentioned had she been able to contribute—elderly parents or carers, who have concerns about what will happen to the people whom they have been supporting. I hope that the flexible support that the report refers to will be put in place and that those carers and relatives can be confident about their care. There is no doubt that early planned support is worth its weight in gold, not just in preventing a crisis, but in reducing the anxieties of carers. I commend the report to the chamber.
I welcome the report. I am sure that there is cross-party support for continued improvement in community care for those with learning disabilities. Indeed, it was a Conservative Government that introduced community care in the early 1990s, a change that brought great benefits to people with learning disabilities.
The report states:
"Estimates suggest that there are about 120,000 people with learning disabilities in Scotland . . . compared with 83,000 . . . about 35 years ago. This trend will continue for at least another 10 years. As a result more people are living with their families or on their own and can access local services, in the community."
I am sure that we all agree that that is a good thing.
"This means that these local services are being asked to meet needs more than ever before."
That is why it is important that this review was held. The report continues:
"The range of those supported living options has increased a great deal in recent years . . . The numbers of people in hospital have reduced from nearly 6,500 in 1980 to fewer than 2,450 in 1998".
I am sure that the chamber will agree that that is a step in the right direction.
Of course, it is worth repeating what the Conservatives contributed to attaining that improvement. I say that not because I seek to claim any party advantage or to score points, but to argue that there is no monopoly on this matter—we all have something to contribute. In community care, which itself has been a significant help, invalid care allowance provides an independent income for carers of normal working age, including married women who have sacrificed the opportunity of full-time work to care for someone who is severely disabled. Expenditure on that allowance has risen from £4 million in 1978-79 to an estimated £609 million in 1996-97. No one can say that that is not a considerable sum.
I hope that as the recommendations in the review are put in place we will continue to have cross-party support. In speaking to his amendment, Duncan Hamilton was careful with his words; he showed that, although he wished to take the debate further, he was willing to endorse the Executive's position. That was an important point.
Of course there is much more to be done. The minister is right to say that we cannot stand still and wait. The report makes it clear that considerable change is required to put the individual at the heart of any decisions that are made. That is an important step in the right direction. When talking about education in schools and universities, we talk about a child-centred approach. It is important that this review takes an individual-centred approach. Although I endorse many of the 29 or 30 recommendations in the report, the third recommendation—that everyone should have a "personal life plan"—is particularly attractive, given the context that I have outlined.
As I said, we welcome the report and the next stage of the review. I have done voluntary work in this area and, in my previous life as a public relations consultant, I worked with a number of clients in this area; I see no reason for party political debate or point scoring. The report has been presented and the debate conducted in a way that demonstrates our wholesale commitment to find a common view. That is a good thing and is what the agencies, the charitable organisations and the individuals concerned want, because they believe that, with the Parliament's help, they can achieve great things. This is an area where the Parliament can achieve a consensus; I look forward to the review stage and to finding a solution that we can all support.
I, too, welcome the review and hope that it will lead to a better future for people with learning disabilities. However, I would like the minister to respond on the future of the residents of the Royal Scottish National Hospital, which is in my constituency and which has, for many years, been a home for people with learning disabilities.
I pay tribute to the dedicated staff at the RSNH who provide a high standard of care for the residents. I would like the minister to give an assurance that every effort will be made to find alternative employment for them when the hospital closes. I am sure that their skills and experience will be very valuable in caring for people with learning disabilities in the community.
I will concentrate most of my comments on the needs of the residents of the hospital. At one time, the RSNH—as the name implies—was a national hospital, admitting people with learning disabilities from all over Scotland. Some of those people have been resident in the hospital since childhood and are now quite elderly. As a result, the RSNH has been their home for most of their lives. However, under the community care programme, there seems to be a tendency to repatriate them to their areas of origin. I do not particularly like the word "repatriate", but I think that some professionals use it.
Although so-called repatriation might be acceptable in cases where there are still relatives in the area of origin, in other cases the residents have no relatives and all their friends are in or around the RSNH. It would therefore make sense to find a community placement for them where they can be together with their friends. However, such a solution might entail considerable bureaucracy because of the involvement of different health boards and different local authorities for the provision of funding.
For example, I was recently asked to take up the case of an old lady who originally came from Kirkcaldy. She has a learning disability and has been resident in the RSNH since 1918. She is now 90. Although she is very friendly with other residents in the hospital, the authorities in Fife initially proposed that she should be transferred to a nursing home in Kinglassie. Removing an old lady to a strange environment at that stage in her life could have a very upsetting effect, as indeed it did in this case. The old lady would obviously feel more at home if she were offered a place in the community with her friends. Although I am pleased that fresh consideration is now being given to that case, it is not unique. Eight ladies in the hospital are in similar circumstances and six different local authorities and health board areas are involved.
I would be grateful if, in his winding-up speech, the minister could consider a more flexible funding arrangement so that there are no obstacles or delays in finding suitable community placements for residents of the RSNH. I am sure that such flexibility would be of great benefit to people with learning disabilities and hope that the minister will respond on that point.
I will be brief, as I realise that others want to speak.
I commend the review of services for people with learning disabilities, which is an area of service provision in which Scotland has lagged behind other countries—including England and Wales—for many years.
As my colleagues have said, we welcome the report and its recommendations. However, we are concerned about resources. That concern is shared by organisations such as Enable, which said that it was
"extremely disappointed that the report is so vague about resources."
As has been pointed out in previous debates, the health department's spending on long-term care has dropped significantly as institutional care is phased out and community provision is phased in. However, social work budgets have not been expanded sufficiently to take the strain of the switch in emphasis away from hospitals towards care provision in the community. From my reading of the report, and from the minister's opening remarks, I note that health boards and local authorities will be required to implement many of the recommendations, such as the appointment of local area co-ordinators, from current resources. Clearly, the ability to do that will vary from area to area, depending on the financial circumstances of boards and councils. Costs will vary according to factors such as rurality, which gets no mention in the report.
What assurances can the Executive give that a consistent standard of services will be available across the country within the target time scale that it set for 2005? Can the Executive guarantee that it will not allow a gap to appear between the closure of hospital beds and the provision of community care, an issue that Richard Simpson raised?
Some hospitals deal with people with mental illness as well as those with learning disabilities. The minister will be aware that, despite the fact that mental illness is one of the Government's priorities, the mental illness specific grant has been frozen for this year and next year. I would like some reassurance that the needs of that group of people will not be overlooked.
I commend the review both for the work that was done to involve people in the consultation that underpins it and for the clear way in which it is presented with useful appendices. This is a good piece of work. I also commend the straightforward recognition of the fact that attitudes have to change and that a lot of the barriers to people with learning disabilities leading ordinary lives are not in their minds but in other people's minds.
All our citizens should be encouraged to lead a full life and that should be facilitated. Individuals and their families should not be constrained by low expectations about what they can do or how they should live. Raising expectations, however, comes with the responsibility of ensuring that those expectations are met.
Supported accommodation and supported employment are two important ways of empowering people with learning disabilities to take charge of and enjoy their own lives in the way that their fellow citizens take for granted as they grow up and move out into the wider world. Many people with learning disabilities will continue to live with their parents or other family members, however, and we know that there is a huge shortfall in the availability of respite provision for carers. That must be addressed urgently.
Taking a pragmatic view, we can say that a little respite can prevent a lot of expensive fallout when carers crack under the strain of coping unaided. As the old adage says, "Buy cheap, pay dear." There is a lot of sense in putting in resources early to avert later crisis; that pays off in monetary and human terms.
A time bomb exists of all those people who would, in an earlier age, have died in early childhood but who now are being looked after by elderly and aging parents who are likely to pre-decease their dependent adult children. Many individuals in that group are invisible, as they are not in contact with the authorities or in receipt of services. None the less, we must be aware of them if we are to meet their needs. Ideally, we should seek them out to offer them the support that they need now and to free their parents from worrying about what will happen to their children when they die.
As I said, many of the barriers are in other people's minds. Those closed and limiting minds can be found among the public at large, among authorities and service providers and sometimes among the nearest and dearest family members. That is why I was pleased that the review highlighted advocacy. That is an essential element of service provision, but it has been widely lacking hitherto and often misunderstood.
Many care managers and service providers feel that they are patient or client centred; they believe that the people with whom they are dealing do not need advocates or they think that they can act as advocates for those people. Carers can also think that. However, with the best will in the world, they are not and cannot be advocates. An advocate must be wholly and unequivocally the voice of the person for whom they are speaking. The advocate has a difficult role; they must be vigilant in not letting their own personality colour the way in which they communicate what the person for whom they are speaking wants to say.
A lot of the good stuff to which we aspire in the review will be delivered by the voluntary sector. This debate is not the time to do it, but there is an urgent need to address the ways in which the voluntary sector can be funded so that it can retain its capacity for innovation and flexibility. Ways must also be found of preventing the waste that occurs when work that has sometimes been built up over years has to end because continued funding cannot be found.
The review is a good piece of work. It adequately sets the scene of where we are and where we want to go and it identifies much of what we need to get there. Some of that concerns hearts and minds, but a lot of it relates to resources, staff, training, infrastructure and money—a lot of money. There is a thread of realism running through the review but—to end on a positive note—we must not let realism limit us in what we set out to achieve. The goals that are set in the review are good ones and, if they are given sufficient priority among the competing priorities, can be achieved.
I acknowledge the importance of the debate and welcome the learning disability review. It is especially important, given the commitment of the Parliament to social inclusion.
Since my election as an MSP, I have had the privilege of working with people with learning disabilities, their carers and professionals and volunteers in that sector. It has been a steep learning curve for me. We face an important challenge to our preconceptions about what learning disability means. Historically, society has taken a limited view of the issue, which has resulted in limited opportunities for those who are defined as having learning disabilities. I want to place on record my congratulations, and those of the Parliament, to the people—whether those with learning disabilities, their carers or those who are working in the field—who, over a long time, have managed to bring about the significant shift in policy and attitude that is creating wider opportunities for people with learning disabilities.
I shall highlight two examples of good practice from my constituency, which can inform the debate on what we mean by good-quality service. The services that are provided are important for people with a variety of disabilities, but are especially important for those with learning disabilities. The first is a project called Junction 51, in Penilee. A partnership between, among others, the social work department, the health board, Enable, the users of the service and their carers, has been able to develop a community-based service that is tailored to the needs of the individual, rather than individuals being tailored to the limits of a building. Junction 51 is based in a broad community resource, with a resulting positive impact on all those who are involved and a shared understanding of differing abilities throughout the community.
The second example is a pioneering development in Glasgow's internal transport service. The service is used not only by Glasgow citizens with learning disabilities, but by other groups with disabilities of various kinds—people who need the service's specialist provisions. Glasgow City Council undertook a best value review of the service. It took a courageous step: it asked those who used and needed the service what they thought of it. The council got answers aplenty on what people needed from the service, what its weaknesses were, and how the service had contributed to the stigmatisation of people with learning disabilities.
From that process emerged a group with the snappy title of parallel transport liaison group. Whatever the difficulties of saying its name, the group is a significant model. It includes the users of the service, the carers, and professionals from the social work department, education and building services—the people most involved in the delivery of the service. As a consequence of the thorough and rigorous assessment of the weaknesses of the service, and a detailed identification of the action that was required, Glasgow City Council has recently taken delivery of the first group of a fleet of 80 buses that are recognised across Scotland as being state-of-the-art in terms of meeting the needs of the people who will use them.
I would like to draw members' attention to the crucial role of the voluntary sector in that example. The group that was most involved was Fair Deal for 1 in 100, a locally based group in Mike Watson's constituency. The group does a whole range of things as it campaigns for those with learning disabilities, but at its heart is a central belief: it does not seek to speak on behalf of people with learning disabilities, but seeks to develop means by which those people can speak for themselves and shape their own lives.
I urge the minister and the relevant committees of the Parliament to consider the crucial work that has been done in Glasgow and to reflect on that model. I also ask the minister to acknowledge that resources should be used not only on the services that people need, but on empowering people with learning disabilities to shape and develop the services themselves. That is not always easy, but I believe that it is crucial to getting the services right.
I will finish on a point that concerns social inclusion. I make the point gently to the SNP, because I know that we have had cross-party consensus in the debate. It is unfortunate that, in its amendment, the SNP has—inadvertently—removed a statement that captures the approach of empowerment. The SNP's amendment takes the line in the Executive's motion about the Parliament looking forward
"to a future where all relevant agencies work together with people with learning disabilities to ensure that they can live as full lives as possible in our communities"
and replaces it with a line saying that the Parliament
"welcomes the opportunity for inter-agency co-operation to ensure that those with learning disabilities are treated with equality and respect."
I believe that the Executive's approach reflects the importance of putting people at the heart of the process, rather than having agencies doing things for them, no matter how well intentioned the work of the agencies may be. I do not believe that the SNP intended not to put people at the heart of the process, but I believe that when we talk about these issues, the empowering of people to speak on their own behalf has to be central. Although we can do good work for people, the work that is done and the service that is delivered will be much more valuable if people are empowered to talk for themselves.
I support the review, and I give my best wishes to those who will take forward its recommendations.
We now move to the winding-up speeches. I apologise to the members who were not called to speak.
I would like to start by thanking the minister, Iain Gray, for the considered and thoughtful way in which he introduced this topic today. Iain mentioned fullness of citizenship and the public's hitherto negative view. Those are important themes. I hope that one is of the future, and one is of the past.
The review talks about the greater control and say that people will have over their own lives. That to me is the key to the issue. I would like to echo the point that Johann Lamont made: by concentrating on the funding issues for local authorities, Duncan Hamilton—who is a far better debater than I will ever be—takes away from the wholeness of what we are trying to do today. I am sure that he did not do so intentionally.
We are trying to promote a new way of thinking. A sum of £275 million per annum is going in. When we take all that money, gather it together, and consider how we can involve people, there will be savings that we can make. There will be ways of rechannelling money. That is the important thing about the review—getting away from the compartmentalised departmentalism that has been the problem thus far. It is almost as simple as a right to a happy life. If we believe that all people are equal, that includes people with learning disabilities.
When I was a child, such people were put away. As I remember, when a child first came across someone with a learning disability and asked "What is that?" their mum and dad would say, "That is someone who is not quite right"—let us not mince our words. It was a shock because such people were kept out of sight. It is very different today and could be very much more different in the future. That is the vital theme—like a family, we must embrace them into our communities.
In backing the review and wishing it well, I want to take up the point that was eloquently put by Dr Richard Simpson and Nora Radcliffe, on aging parents as carers. In remote parts of Caithness and Sutherland, people in that situation are worried sick. For an elderly couple living in Melvich, or Melness, Talmine or Tongue, Craig Phadrig hospital in Inverness is long way away. As we take people back into the communities, we must solve the big problems created by distance and rurality. We also have jobs to think about. It is far easier to get an ASDA-type job in Inverness, Dundee or Aberdeen than in remote north-west Sutherland. I have every confidence that the Scottish Executive will gradually and in a considered manner take on those problems, but we must not take our eye off the ball. There must be equality of service provision between cities and remote and rural areas.
This has been a well-tempered and positive debate. I am delighted to support the Deputy Minister for Community Care and all those working in this field in the work that lies ahead.
Since I left the Army, I have been all too often disappointed and surprised by the lack of liaison and unnecessary barriers that I find in the care sector. In the past, that has led to individuals suffering inappropriate care, bewilderment and exclusion. Therefore, I have great pleasure in recognising the valuable recommendations in the report, of co-ordination and liaison. It was, after all, the Conservatives who began to try to get people with learning difficulties out of hospitals and into the communities.
I have some questions on the report for the Deputy Minister for Community Care, and I ask him to clarify the Executive's position in his summing-up. Will he assure us that as people are being returned to communities, the smaller number of people, often with the most complex needs, who are left in institutions, will not be more isolated with fewer facilities? Will he ensure that the change fund will be substantial enough to bridge the gap between rundown and total closure and setting up community services?
The development of partnerships in practice and the appointment of local authority and area co-ordinators should go a long way to smoothing the path of an individual with difficulties. While I am concerned that in the report the Executive has put rather a lot on the local authorities and health boards and perhaps recognises too little its overall responsibility, I look forward to the national Scottish centre for learning disabilities and hope that it will bring leadership and co-ordination.
Taking the earliest and the right opportunity for someone to be assessed and given the appropriate care is crucial. I recognise that the recommendations in the report go a long way to putting that right.
It is essential that the individual—whether carer or ward—is at the heart of the Executive's plans. The previous Conservative Government helped carers, and between 1990 and 1997 it trebled the disregard for carers' incomes. We would like to see more development of direct payments to carers and wards, to ensure more choice for the individual. The Conservative party sees choice as a vital component of inclusion.
I would like to pick up some of the points that have been made in members' speeches, especially Tricia Marwick's valuable points about housing associations and the concerns that were brought to the Health and Community Care Committee yesterday by the Scottish Federation of Housing Associations. I would like to underline the concerns that have been expressed about secure accommodation for people who have learning difficulties and who are sex offenders. There is a lack of concern about that matter in Scotland, and that must be addressed.
Richard Simpson's point about resource transfer has been examined as part of the wider community care inquiry, which the Health and Community Care Committee is undertaking. I urge the minister to take the point seriously, because resource transfer might provide a safeguard for the future.
The Conservatives will support the Executive's motion and we welcome the report, which will, I hope, help to plan for a long way into the future. I looked up the definition of disability in the dictionary; one of the definitions is "helpless". I hope that the review will go some way to changing such definitions and attitudes and that people with learning difficulties will be able to play their full part in a new, inclusive society.
I also welcome the opportunity to have this debate. I worked previously with people with disabilities, including people with learning disabilities. There is nothing that is more frustrating to professionals in the field than the fact that politicians appear not to be interested, so I welcome warmly the fact that we are examining the issue and discussing the report.
Some of the language that has been used has, however, been a little unfortunate—I believe that one of my colleagues used the term "incarceration". Many people were in long-stay hospitals who should not have been in such places. They were there because they had had to be there at a particular time. Many members of staff in long-stay hospitals who have worked with people with learning difficulties provide dedicated care to individuals to this day. We should record that in the debate.
Although I respect Mary Scanlon greatly, I feel slightly differently from her. She referred to today's debate as an historic occasion, but in my view, the historic occasion will come when the last long-stay hospital for people with learning disabilities closes and the services and resources that the former patients require are available in the community.
Unfortunately, for too long, services for people with learning difficulties have been not merely the cinderella services, but the cinderella of the cinderella services. That has needed to be addressed for a long time.
When I read the report, one of the points of interest that I picked up was the idea of local area co-ordinators. They could have a valuable role to play in the design and provision of local services, but there is a need to examine how that would be done at a national level. Will there be national guidelines to ensure that services are developed and to ensure that the role of the co-ordinators is the same throughout Scotland? We must ensure that co-ordinators are not doing one thing in one local authority area and another thing in another local authority area. We must take a strategic view of the role of area co-ordinators and I like to think that that will be done at national level, so that those concerns are addressed.
The role of local area co-ordinator is also interesting because it is a departure from the present system of care management. As someone who used to provide care management, I think that that raises a few questions about whether the present care management model is working, not just for people with learning difficulties but for people with mental health problems and other disabilities.
The area co-ordinator will have an important role in putting forward plans for change funding. However, we must examine what the details of that change funding will be.
Johann Lamont made a good point about empowerment. It is important that any new service provision for disabled people should be about empowerment. The policy of direct payments provides the opportunity to empower disabled people as much as possible. Iain Gray will probably recall a written answer that he gave to me earlier this year, which highlighted the extent of the failure of direct payments. Only about half the local authorities in Scotland implement direct payments, and of those schemes about half are pilot projects. Direct payments are a policy that could be developed further. If we are to grasp the issue of empowerment, particularly for people with learning difficulties, we have to overcome the current problems in the way the system is implemented.
I welcome the fact that the review sets down a time scale for the closure of our last long-stay hospital for people with learning difficulties. In my previous job, I regularly visited the Royal Scottish National Hospital. Richard Simpson made a valid point about the way in which resource transfer works, which links into what Dennis Canavan said. The RSNH has patients from all over Scotland. When a care plan is prepared for an individual to move back into the community, the bun fight starts. It is said that the individual came from Kirkcaldy or Glasgow; Stirling or Falkirk say that they are not providing the money for them to move back into the community, and Kirkcaldy or Glasgow say the same. We have to overcome that.
The one thing that must come out of the review is truly joined-up policy making. As several members have highlighted, if we close the hospitals, we must have the right services in the community. Those services must develop at the same rate as hospital discharges take place. I hope that time scales will be set for community services development as well as for the closure of hospitals, so that when the last hospital closes in 2005, the right services will have been developed at the right time to match up with that.
I ask the minister to consider the issue of employment and the way in which therapeutic earnings affect people who are in supported accommodation. Being able to take up purposeful employment has a major impact on people with learning difficulties. If we address that issue, not only will people be able to go back into the community, they will be empowered and will be able to integrate into society and play their rightful role in our community.
Finally, our amendment reflects what the report says. Johann Lamont is right about empowerment, but the report mentions inter-agency co-operation. Our amendment is intended to show that the Parliament is committed to taking forward the whole report.
I recall that at one of the first ministerial engagements that I undertook in connection with the learning disability review, a young man with a learning disability said to me forcefully, "We are never listened to." I promised then that they would be listened to now, and I hope that this debate gives people with learning disabilities and their carers confidence that that is the case, today and in the future.
Perhaps we have run the risk of painting too bleak a picture. Michael Matheson is right: we should acknowledge the good work that has been done and the many dedicated members of staff who work in that area. I also agree with Michael's view about what is an historic day. Lothian made a proud boast last year that no one with a learning disability in Lothian lives in a long-stay institution. By the end of this year, no one from Lothian will live in a long-stay institution anywhere in the UK. There are examples that can be followed and which show that we can make such ideas work.
Expenditure on social and heath care for people with learning disabilities has risen from £235 million to £270 million over the past four years. However, it cannot be denied that the disparity raised by Duncan Hamilton exists. Per head of population, less is spent in Scotland on people with learning disabilities and on services for them than in England, and the disparity is even more apparent when Scotland is compared with Wales.
However, I do not accept the conclusion of Duncan Hamilton's argument. The flaw in the SNP amendment is that that disparity does not point to underfunding—rather, it points to a lack of priority in funding services for people with learning disabilities. The key point is that we could double resources tomorrow, but if learning disability does not get its share, or those resources are spent on the wrong services, we will not have solved the most significant problem.
I accept fully what the minister has just said, but he is in danger of setting up a false dichotomy between better use of existing funds, and better prioritisation, and new money. What is set out in the report, and what our amendment seeks to achieve, is both better use of resources and new money.
I am not in danger of setting up a dichotomy, false or otherwise. However, Mr Hamilton is in danger of failing to lift his eyes above the immediate future to look towards the long term. Any commitment on funding made by me today would have no validity whatever in 10 years' time. It is important that we change the priority for people with learning disabilities and the configuration of services that support their lives, because such steps will still be making a difference for people with learning disabilities 10 years from now. The amendment lacks that long-term vision.
While we are still on resources, Mr Hamilton also made the point that we cannot pay for old and new at the same time. Of course that is correct, but that is exactly the purpose of the change fund. In my opening speech, I said that we will soon make clear the extent of that change fund within the spending review process.
We know that the broad policy for community care for people with learning disabilities is right—today's debate has shown that. However, we also know that being in the community is not the same as having a full and fulfilled life. Mary Scanlon and Richard Simpson both made the point that we must have confidence in the new services. For elderly carers, that is a key issue, and we must acknowledge that it is easier to have confidence in bricks and mortar than it is to have confidence in a care package. One reason the commission for the regulation of care, which will be introduced, through legislation, next year, will regulate and inspect day services and services delivered at home is to give us that confidence.
Mary Scanlon was also right to point out that the number of people with learning disabilities is growing annually. That may be because people are living longer, but I agree that more research must be undertaken, and that will be one of the functions of the Scottish centre that we intend to set up.
Many members have drawn attention to the fact that we have waited 20 years for the review. If that is the standard—we hope that it is not—we will not get this chance again in our political lives. Well, most of us will not, but I suppose that it is possible that Duncan Hamilton will get the chance again during his political life. [Laughter.] I do not want to think about that. The crux of the matter is that that standard is the same for people with learning disabilities. We must get it right this time for them, and that is why I welcome constructive criticism. I will address some of that criticism briefly.
Placing local area co-ordinators in local health care co-operatives is but one suggestion and we are keen to discuss how that should be organised. Tricia Marwick talked about the range of tenancies in supported accommodation. I believe that we need a range of tenure options, but Scottish Executive guidance on tenancies is clear that full tenancies should be the norm, and I will discuss with colleagues how we can ensure that that guidance is adhered to. However, the debate gives me the opportunity to acknowledge the importance of the work in that area of housing associations, such as Key Housing Association, Ark Housing Association, the Carr-Gomm Society and many others.
I am pleased to say to Tricia Marwick that the chief nursing officer will review the training of learning disability nurses and their role in the light of the review.
Richard Simpson and several others talked about the importance of getting the reprovisioning process right when we consider closing institutions. That process must be transparent, it must be done with consultation, it must involve users, it must involve carers and—I say this to Dennis Canavan—it must involve staff.
Dennis Canavan spoke about what he called repatriation. I assure Dennis that location is not a funding issue. However, I say with reference to the hospital at Larbert that, because reprovisioning involves every local authority in Scotland, it is hard to see how that can happen without some bureaucracy. That situation was created many years ago, as the example that Dennis gave illustrates. The key thing when arranging packages is that people should have someone who can act as their advocate. I commend Dennis Canavan for being an efficient and effective advocate for some of the patients at the hospital in his constituency. Nora Radcliffe and Johann Lamont talked about the importance of advocacy generally, and I assure them that that is a key recommendation of the report.
Given that it is Down's syndrome awareness week, we should note that this debate has been not about people with learning disabilities, but about us. It is our attitudes that must change. Learning disabilities must be much more to the fore in our minds. We have come some of the way, but the difficult part of the journey lies ahead. Margaret Smith is right—that is a responsibility of everybody in this chamber and beyond.
In my opening speech, I spoke about the meeting of an ex-staff member and an ex-patient from Gogarburn, which took place just outside the chamber. That ex-patient's journey had taken him from Gogarburn to the doors of this Parliament. This review has opened those doors today, and we must never again shut out people with learning disabilities. Tricia Marwick was right: people with learning disabilities may not find a place in the sun, as the world can be a palace of the winds, but the world is where they want to be—the same as us.