New Learning Disabilities Strategy
The next item of business is a debate on motion S4M-07787, in the name of Michael Matheson, on the new learning disabilities strategy, “The keys to life”.
I point out to members that we have a fair bit of time in hand, so the Presiding Officers will be generous.
14:23
The new learning disabilities strategy, “The keys to life: Improving quality of life for people with learning disabilities”, was published in June of this year. It is the second national learning disabilities strategy for Scotland, and we are the first part of the United Kingdom to produce a second strategy of that nature.
As a nation, we can be proud of some of the changes that we have brought about in the quality of life for people with learning disabilities since “The same as you? A review of services for people with learning disabilities”, our original learning disability policy, was published in 2000. It was highly successful in shifting the balance of care to support more people to live in their community, and it led to the historic closure of more 1,000 long-stay hospital beds that many people called home for decades. It also led to improved day opportunities and created employment and meaningful activities for those with a learning disability.
The human rights of people with learning disabilities are at the heart of the keys to life strategy. I believe that everyone should have those rights and freedoms and that our statutory agencies should be transparent in demonstrating how they respect and uphold human rights in all their policies and practices. People with learning disabilities need information so that they know what their human rights are.
Since “The same as you?”, people with learning disabilities tell us that they are generally more accepted and valued in their communities than they were before and that, rightly, they are seen as people who can contribute to Scottish society in very positive ways. However, to be truly accepted in society means being treated equally and fairly in other ways. It means having a health service that is committed to changing the fact that people with a learning disability can still die 20 years earlier than the general population—that is simply unacceptable. Their lives and life choices matter as much as those of any other citizen.
We must make addressing the stark health inequalities faced by people with learning disabilities a national priority. Much of the emphasis in the 10-year keys to life strategy is on health issues so that we make the required change. It is about improving health practice and outcomes so that people’s human rights are respected and upheld. In my view, if we do not achieve that shift, we will have failed as a society to ensure that people with learning disabilities enjoy the same rights as everyone else.
We all want people with learning disabilities to be healthier generally. For that to happen, those who work in healthcare need to better understand the health needs of people with learning disabilities. We also want all health professionals—not just those who work in specialist learning disability posts—to know how the health needs of people with learning disabilities can differ from those of the general population.
We already know a lot about the health needs of people with learning disabilities. For around four years, the Scottish Government has led a national learning disability health inequalities network, which consists of senior health professionals who come together to identify ways in which we can tackle those stark health inequalities more effectively. Through their work, they have developed projects that are about self-care, prevention, awareness raising and training. For example, the take 5 programme in Glasgow is an effective way for adults with learning disabilities to lose weight by having a personalised diet and by increasing exercise. Another good example is the NHS Western Isles learning disabilities collaborative, which has an electronic health assessment that is linked to general practitioner health records so that individuals get regular health screening.
However, I want to build on the progress that has been made in recent years, which is why I have commissioned the Scottish learning disabilities observatory to provide us with the evidence and data that are required if we are not only to take action on the basis of improved understanding, but to demonstrate clearly improvements from those actions. To assist us with that, I intend to develop a health improvement, efficiency and governance, access and treatment—HEAT—target to capture the evidence and data that will help to support the transition. The observatory is also committed to help us to better address the causes of unnecessary deaths of people with learning disabilities. That work will help to inform the interventions that we need to take forward in the years to come to address the issue.
The role of primary care is integral to our success, which is why an early task will be to explore how the GP contract in Scotland can best meet the needs of people with learning disabilities. That work will include an exploration of the possibility of the reintroduction of an enhanced service.
Another aspect of the primary care role will ultimately be to develop annual reporting of trends in the management of long-term conditions of those with learning disabilities. I recognise that having to go to hospital or attend another healthcare setting can be an anxious time for anyone—often more so for people with learning disabilities. Small things matter, such as having both the emergency care summary and the key information summary to meet the information needs of people with learning disabilities who access healthcare services.
It is essential that services work together to make sure that people with learning disabilities get the right level of support when they are in hospital and have access to the right medical services. Most important, people with learning disabilities should get the same treatment as the general population.
People with profound and multiple learning disabilities face particular challenges in their daily lives. They need simple things such as appropriate toilet facilities. It is simply unacceptable for families to have to change their daughters or sons on toilet floors. That is undignified and unhygienic, and it involves heavy lifting by the carers, which has the potential to cause serious damage to their health. Sometimes families opt to stay at home, with increased isolation and a lack of stimulation as results. That is why one recommendation in the new strategy is to extend the number of changing places toilets in Scotland, which are designed to allow access for all. I thank the Profound and Multiple Impairment Service—PAMIS—for the tremendous amount of work that it has done over the years in the area and the work that it intends to do in assisting us to address the issue in the future.
A challenge for others, and one that I am committed to addressing, is the fact that some parents and carers of people with complex needs have to visit their children in facilities outwith Scotland. I appreciate how difficult it must be for them to maintain regular contact and I recognise that it can be upsetting and distressing for them and their children. Everyone deserves to live near family and friends. That is why we have established a group to look at how we can better deliver services for people with complex care needs more locally, here in Scotland. In other words, where we can, we will bring people much closer to their own home to meet their care needs.
Underpinning all that activity is the need to ensure that people with learning disabilities and their families know what is available to them. Alongside that, it is important that they are confident that the support that is available to them is of a high quality. We already have learning disability quality indicators, and a review of general health services and specialised learning disability health services will help us to ensure that NHS Scotland is fully compliant with the quality indicators that we have laid down.
On-going objective scrutiny of progress in the area is key to success in making further progress, which is why I have asked the Care Inspectorate and Healthcare Improvement Scotland to ensure that strategic commissioning—both process and implementation—are examined as part of their overall inspection of services for people with learning disabilities.
So far, I have concentrated on the anticipated positive changes in health, but life is about much more than that. At the heart of the keys to life strategy is the principle that individuals should have greater choice and control over their lives. The same principle is central to the Social Care (Self-directed Support) (Scotland) Act 2013, which will come into force next year. However, the new legislation is more than just the act itself. We need to challenge our local authorities to meet the aspirations that are set out in the 2013 act and the strategy.
We need to support professionals to engage with self-directed support as part of their core practice, and we need to ensure that we provide clear and unambiguous guidance to emphasise that support is about a whole variety of lifestyle issues and that we reform the commissioning processes that our local authorities use. At a very basic level, we need to tackle the lack of awareness of the options that are available to people under the new legislation. The benefits of the self-directed support legislation are very clear, and councils and providers have an important role to play in ensuring that the legislation is effectively taken forward.
“The same as you?” encouraged local authorities to review their day care services, and we have seen considerable change in the way in which those services have been delivered in the past 13 years. A range of models is now in place across Scotland. Some of those models involve little or no contact with day centres; others involve a balance of centre-based and community-based activities. However, I am aware that, for many people, day centres will still play an important part in their support arrangements, especially people who have more complex needs and people with profound and multiple learning disabilities. It is still essential that services and staff continue to develop personalised care approaches that enable people to make choices and follow activities that are meaningful to them, including the choice of being able to use a day care facility.
I know that living an independent life is important to people with learning disabilities. That means having the same choice and control in their lives that others have.
The minister will be aware that the Education and Culture Committee has undertaken an inquiry into looked-after children and some of the outcomes that follow professionals’ decisions. In that inquiry, we took evidence from parents who had learning disabilities. They stated—I think that research backs this up—that perhaps as many as 40 per cent of them have their children taken away and put into residential and other forms of care. How does that match the approach that professionals should take in treating each case on an individual basis rather than perhaps looking at parents with learning disabilities as a homogenous group?
The member has raised a very important point. I am aware of those concerns.
I was going to touch on the transition between services, particularly for those who receive care through education services and are moving into adulthood, and how we can improve that transition. A key part of that is ensuring that we translate the getting it right for every child principles much more effectively into managing the transition from children’s and young people’s services into adult services. The issue that the member raised can best be addressed through, for example, the Children and Young People (Scotland) Bill, which is a mechanism that will allow us to ensure that we take a much more targeted approach and have a range of services in place to support young people and their families to make informed choices. We can therefore ensure that parents who feel that the system currently works against them will feel that it works more in their interests and in those of the young person so that they can make the right choice.
On transitions, I recognise that many people with learning disabilities need additional support when they leave school if they are to have meaningful education and employment. So that there is a smoother and clearer pathway into education and employment, “The keys to life” makes specific recommendations on how local authorities, further education, Skills Development Scotland and the transition forum can work more closely together to ensure that the GIRFEC framework better prepares young people with learning disabilities when they leave school.
We also need to ensure that young people get access to accessible information to support them to understand all the options that are open to them and are able to make the right choices from those that are available to them. There is an expectation that personal life plans will be an integral part of the commissioning plans, to inform the high-quality services that we expect to be provided to support individuals to achieve better outcomes for themselves.
Getting people into employment is a national priority. We know that most people with learning disabilities want to work in paid employment, so we need to provide them with more training and education. The Scottish Consortium for Learning Disability will work with Scotland’s Colleges and Skills Development Scotland to ensure that that happens. In addition, the national implementation group will work with local authorities, the national health service and the third sector to open up employment opportunities within those agencies for people with learning disabilities.
I am conscious that we have made significant progress in recent years by improving the way in which services are provided for those with a learning disability and by improving their life chances. However, there is still much to be done, and I commend the new strategy to Parliament.
I move,
That the Parliament welcomes the new learning disability strategy, The keys to life, which was launched on 13 June 2013 in partnership with COSLA; notes that the strategy highlights the health inequalities and barriers to social inclusion for people with learning disabilities but recognises that they are generally much more accepted and valued in their communities than they ever were before, and considers that Scotland can be proud of some of the changes in the quality of life for people with learning disabilities but accepts that there is still much to do.
14:40
Scottish Labour is committed to improving the quality of life for people with learning difficulties, and we welcome the debate and the opportunity to examine how we can best act to turn that aim into reality.
As the minister said, the previous strategy, “The same as you?”, which was introduced in 2000 by the Labour-led Executive, has been hugely influential in changing attitudes and increasing support for people with learning disabilities. We therefore welcome the fact that the Government’s new publication, “The keys to life”, reflects the underlying principles of that strategy.
As I have said before in the chamber, we will support the Government where we agree with it and believe that it is doing things right, but we will point to areas where we believe that it could—and should—do more. As the Government refreshingly acknowledges in the motion, there is more to do, and we need to work across party lines to address that.
We know from the most recent statistics that there are more than 26,000 adults and 16,000 children and young people with learning disabilities who require support. According to Learning Disability Alliance Scotland, those people want three main things: a secure and safe place to stay; meaningful things to do with their time; and friends and family in their life. I do not think that any member in the chamber would dispute that those are things that everybody wants and which should not be too much to ask for.
Our challenge is to ensure that adequate support is provided to those who need it to allow them to fulfil those aims. We welcome the publication of the new strategy and support the drive to deliver better outcomes for people with learning disabilities—as well as their families and carers—in the areas of life that they say are most important to them.
However, there are considerable challenges that must be addressed if we are to ensure that the strategy does not fall into the trap of simply becoming another strategy that sounds good on paper but has little impact on the ground. Rhetoric must be turned into reality if the strategy is to be deemed a success.
Organisations such as Learning Disability Alliance Scotland have expressed reservations about the strategy’s lack of an overarching theme, and we must pay heed to their views. As I am sure many members have discovered for themselves in the past few days, “The keys to life” is a lengthy strategy that stretches to more than 170 pages, which detail 52 separate recommendations. Although the strategy declares a human rights focus, we need to ensure that people with learning disabilities are at the centre of improvements to the quality of their lives. In other words, we need to ensure that we are working with people rather than talking at them.
We must also consider some of the challenges that lie outside the strategy, and which will undoubtedly have an impact on its success. It is essential that the Scottish Government takes action to ensure that we establish a fair, consistent and transparent system of care for disabled people throughout Scotland. Resources continue to present a huge challenge to the delivery of support services, and local authorities of all colours are struggling with the pressures of delivering services in the face of vastly reduced budgets.
As a result, there has been a sharp increase in the use of care charges. Some authorities are charging as much as 100 per cent, and 25 of the 32 local authority areas charge a rate that is higher than the top rate of income tax. In my area, the previous Renfrewshire Council administration introduced charges for people with learning disabilities to pay transport to day care centres. That policy has now—thankfully—been reversed, but it had a serious impact on a large number of vulnerable people in the community. That emphasises the need for a consistent approach across the country that places the needs of people with a disability or learning disability at its centre.
I agree with the strategy when it states that the key to delivering effective services is to ensure that people are provided with the outcomes that they need at the right time and in the right place. We know that a range of public bodies are involved in delivering services that people with learning disabilities need. We should be encouraging local authorities, college and health boards, for example, to work together to achieve the kind of joined-up approach that benefits people, and to do that in conjunction with people with learning disabilities.
I am very much in tune with what the member says about the needs of people who have learning disabilities. Does he also agree that those who have learning disabilities should have choice rather than other people simply deciding what their needs are and expecting them to agree?
As I have been saying and will go on to say, people with learning disabilities should be involved and consulted on the services that they need. That is crucial. The approach to joined-up services should be done in conjunction with people who have learning disabilities. As Inclusion Scotland said prior to the debate, if people with learning disabilities are to be at the heart of the commissioning process, they must be involved. That makes Stewart Stevenson’s point.
Adults with learning disabilities should have the opportunity to learn at college but unfortunately, that opportunity is being taken away from hundreds of people in Scotland. The Scottish Consortium for Learning Disability published a report in August that estimated that around 9 per cent of people with learning disabilities attended further education colleges in 2012. That is a fall of nearly 300 people compared with the previous year, from 2,696 to 2,407.
It is clear that there are significantly fewer courses for people with learning disabilities than there were just a few years ago. That is just one element of the human cost of the Government’s cuts to colleges. A Scottish Consortium for Learning Disability study from last year showed that there had been a 34 per cent cut in part-time places for students with learning disabilities from 2,155 to 1,413. In addition, 2012 figures from the same organisation showed that the number of adults with learning disabilities who attend college for 2.5 days or less per week is down 20 per cent on 2011. That is no surprise when we consider the drastic reduction in the number of part-time courses.
It is not just the Scottish Consortium for Learning Disability that is saying that. A 2012 survey of Scotland’s colleges by Enable Scotland found that the number of courses for people with additional support needs has halved since 2007, with a 46 per cent cut in the past two years and a 42 per cent cut in the past year. The number of staff who are teaching people with additional support needs has been cut by 16 per cent in the past two years.
The Scottish Government’s strategy suggests that people with learning disabilities should be included in mainstream further education classes. The argument is that it will give them greater access to award-bearing courses and improve employment prospects. However, that fails to acknowledge that while some people with additional support needs might be able to cope with mainstream classes and benefit from the opportunity, there are others for whom mainstream classes would be a route to failure, lowering self-esteem and perhaps causing further retreat from mainstream life. Any efforts to encourage people with learning disabilities into mainstream classes must be matched with a commitment to provide them with the additional support that they need; otherwise, the disproportionate impact of college cuts on people with additional support needs will only get worse.
It is clear that people with learning disabilities are suffering as a result of the Scottish Government’s decision to slash college budgets. People with learning disabilities are not getting the opportunity and specialist assistance to learn. As a result of that, the Scottish Government is preventing them from accessing the skills and qualifications that they might need to get and hold down a job. The minister mentioned employment figures and it is concerning that the figures show that there is an increase in the number of adults with learning disabilities who are failing to secure employment. In 2012, 3,393 adults with learning disabilities were recorded as being in employment or in training for employment, which is just 13 per cent of all adults with learning disabilities who are known to local authorities and represents a decrease of 653, or 16 per cent, compared with 2011. Meanwhile, 55 per cent are neither in employment nor in training for employment. Is that any wonder, if we are cutting their college courses? Obviously, we should commend the good work that organisations do to help with supported employment and we should encourage more such initiatives, but we are undermining that with the approach to colleges.
I believe that the high proportion of people with disabilities and learning disabilities who are affected by the bedroom tax and other iniquitous welfare reforms means that it is essential that the Scottish Government uses its powers to act to negate the bedroom tax. Jackie Baillie was right when she said that a UK Labour Government would reverse the bedroom tax and, as we speak, Ed Miliband will be reaffirming that commitment.
The Scottish Government has already found £20 million and it should commit to finding the other £30 million. There is nothing outlined in next year’s budget to support the vulnerable individuals and families affected, as John Swinney keeps people on the hook before next year’s referendum.
The Scottish Government should also support our plans to legislate to prevent evictions as a result of the bedroom tax. The people who are affected—the people whom we are here to represent—need and deserve action from the Scottish Government.
Scottish Labour welcomes the publication of “The keys to life”. We are pleased that it maintains the underlying principles of the previous strategy and of course we support its aim to improve the lives of people with learning disabilities. However, for people with learning disabilities to see a genuine benefit, we need more than a strategy that simply sounds good on paper. We also need action to tackle the disproportionate effect that welfare cuts and cuts to colleges are having on people with disabilities and learning disabilities.
Progress has been made but there is more that we can and should be doing to ensure that people with learning disabilities have the support and the opportunities that they need to live with the quality of life that they deserve.
I move amendment S4M-07787.2, to insert after “were before”:
“; notes the strategy’s focus on promoting and raising awareness of the human rights of people with learning disabilities; considers that the UK Government’s welfare reform agenda and cuts to social care and further education budgets in Scotland are likely to have an impact on translating human rights into reality by way of services and support for people with learning disabilities”.
14:52
We welcome the debate on the new learning disabilities strategy. We agree with and will be supporting the Government motion. I quote part of it:
“Scotland can be proud of some of the changes in the quality of life for people with learning disabilities but accepts that there is still much to do.”
We commend that honest appraisal of where we are in terms of help and support for people with learning disabilities. I thank the Government for supporting our amendment, which was put forward in a constructive manner. I also welcome the minister’s focus on general health as well as learning disabilities.
In the first parliamentary session, I, along with many others, warmly welcomed the publication “The same as you?” In fact, it has been quoted several times in the chamber over the years, so it is welcome that we appraise where we are and consider what has been achieved and what still needs to be done. In the past 14 years, I think that I have said a few times that there is no doubt that of all the Scottish Executive glossy documents in the first eight years, “The same as you?” was definitely the best.
In preparation for the debate, I got out a copy of “The same as you?” and then started reading “The keys to life”, as well as all the other briefings that members receive in advance of such debates. Before long, I found several strands of work by the Scottish Consortium for Learning Disability and several others. Although a significant amount of work came out of the strategy, I found it difficult to get an overview of exactly where we were.
Then I thought about Bunty MacDonald, who has given permission for her name to be used. Bunty MacDonald from Carrbridge has been caring for her son Craig, who has profound and complex learning disabilities, for more than 20 years. As Fergus Ewing also knows, Bunty is a prolific campaigner and, in her own words, has had to
“fight every inch of the way”
to get appropriate help, support and respite for Craig. I am very pleased to tell the minister that Bunty also agrees with the Government motion. However, she asked me to highlight the three areas that are stated in my amendment, which I hope will be supported across the chamber.
As Neil Bibby said, about 16,000 schoolchildren and young people in Scotland have learning disabilities, and there are about 26,000 adults with learning disabilities who need support. According to Inclusion Scotland, the proportion of learning disabled people in employment has fallen significantly in recent years. By 2010-11, only one in 15 adults with learning disabilities was reported to be in some form of paid employment, yet two out of three learning disabled people want to work.
A recent report on modern apprentices in Scotland revealed that, of the 26,500 people who started a modern apprenticeship in 2011-12, only 74—0.3 per cent—were disabled or had learning difficulties. That area could be focused on, prioritised and improved.
The minister mentioned the transition from child to adult services, which I understand should take place when someone is aged 14. Bunty MacDonald and others tell me that the change leaves parents with considerable uncertainty and much worry about their child’s future. That is bad enough, but the process of finding something when someone leaves school at 19 is fraught with uncertainty.
At that stage, a young person should be allocated a young adult social worker, who works with the parents and the person with learning disabilities to look into and discuss with the family what is available and appropriate, so that there is a transition and a plan to move forward after school. I am aware that many social enterprises and charities are doing excellent work to employ and train people with disabilities in secure employment. The Shetland Soap Company is an excellent example of such a company.
The strategy that we are discussing says:
“We want to help young people with disabilities plan for leaving school ... We will”
work with local authorities, Skills Development Scotland and the Scottish transitions forum. I look forward to better joint working to improve the transition phase.
Last week, Malcolm Chisholm—I see him in the chamber—chaired a meeting of the cross-party group on mental health about bipolar disorder. We heard from many people about the years that it took them to get a diagnosis. If people are given a diagnosis as early as possible and if they get support and treatment as early as possible, that helps them not only to remain in work but to find work in the future.
Recommendation 3 in “The same as you?” was:
“Everyone with a learning disability who wants to, should be able to have a ‘personal life plan’.”
According to Bunty MacDonald, her son has never had one. The personal life plan is essential in setting out not only a person’s assessed care needs but their general health needs.
“The same as you?” also recommended an annual review for people with more complex needs who live at home but, of the 42,000 people in Scotland with a learning disability, only about 13,000 had a personal life plan in 2011. Some might have chosen not to have one, but that is about 30 per cent, and I ask for that figure to be improved.
Recommendation 26 in “The same as you?” was:
“Life plans for people with learning disabilities who live with their parents should include plans for a time when parents may no longer be able to provide care.”
In the report “How is it Going?”, which concerned a survey of 21 to 64-year-olds, Enable Scotland found that by far the biggest worry for the future among people with learning disabilities and their parents was the parents’ death. We do not like to talk about that but it is an important issue for personal life plans.
The third area in my amendment is legal guardianship. I understand that it can take up to two years to achieve legal guardianship and I have heard that, for some people, it can take even longer than two years. I have not had time to look into why there is such a delay or why it is such a protracted process, so I am really not sure whether there are legal obstacles. However, for many people, things have to be put on hold until they get legal guardianship, and two years seems quite a long time. I hope that the Government will look into the issue to see what can be done to reduce that long wait.
Not surprisingly, we will not support the Labour amendment today.
I move amendment S4M-07787.1, to insert at end:
“; considers that particular attention should be paid to the transition between child and adult services and adult services and the next step; recognises the need to ensure that all learning disabled people receive a personal life plan, and believes that more needs to be done to reduce the time taken to acquire legal guardianship.”
We come to the open debate. We have a bit of time in hand, therefore I can give all members up to seven minutes.
15:01
Thank you, Presiding Officer. I welcome the publication of “The keys to life”, which is the second 10-year strategy for tackling learning disabilities and ensuring that independent living is at the heart of everything that we do.
The strategy quite rightly builds on a relatively successful strategy that was commissioned by the previous Executive’s “The same as you?” publication. That strategy saw a move away from long-stay beds, which has resulted in there being 1,000 fewer, over the years. It also saw a move away from the traditional day centre set-up. I welcome both of those changes, but I am also heartened to hear the minister say that there is still an essential role for day centres in some circumstances. In my experience, it may even be a desirable role in some circumstances. I will speak about that later.
While the second strategy was a long time in the making, it was right to take two years to evaluate the previous 10-year strategy and to run that through the national learning disability strategy group. All stakeholders can rightfully say that they have had a key partnership role in producing this second 10-year strategy.
I want to focus initially on some of the health recommendations. The Learning Disability Alliance Scotland said in its very helpful submission that that is the right thing to do. I might also refer to some of those points later if I have time. There is a 20-year reduced life expectancy for adults with learning difficulties, and many learning disabled individuals have complex learning needs and multimorbidities. It is only right that the health recommendations be a major focus of the strategy.
It is also quite right that we quantify the extent of the issue before we can fully address problems and barriers. That is why I welcome recommendations 9 to 12, particularly the new HEAT target that is to be developed to identify and track just how the learning-disabled are using the national health service. In a few years we will ask ourselves why we never tracked that use in the first place. It is clearly the right thing to do, not just for its own sake but, as the strategy makes clear, to identify trends and patterns. I assume that it will also help us to identify areas where improvement is needed, and help us to understand key issues better, such as the unnecessary deaths that still occur within the learning-disabled communities.
The most significant aspect of the recommendations is the attempt to identify and track the social work resources that are provided to the learning disabled using the unique NHS number that every learning disabled individual has, like the rest of us. That will be important and I will perhaps say more about that later, if I have time.
In terms of the broad thrust of the health improvements that we seek, I commend the recommendation on oral health, and with regard to epilepsy, I welcome the greater access to specialist nurses at an appropriate time. I will welcome greater access to neurological services, should we make it a reality.
A meaningful improvement could be made the next time the general practitioners’ contract is reviewed. It would perhaps be worth having within that contract a special indicator of how GPs deal with the learning disabled. We should also mention the greater advocacy needs that the learning disabled may have in accessing GPs and other services, and the greater time that they may need with the GP. There is a lot to welcome within the health aspect of the strategy.
I also give a nod to recommendation 7, which suggests that local authorities and NHS boards should, by 2015, have joint commissioning plans to
“take account of the needs of people with learning disabilities”.
Recommendation 7 also says that plans should maximise “independence and control”. That is clearly the direction of travel in which we want public policy to go to meet the needs of our learning disabled communities.
I will concentrate now on recommendations on traditional social care and independent living. In doing so, I will—as members could probably predict—mention Glasgow City Council’s reform of day centres for the learning disabled. I preface that by saying that local authorities of all political persuasions have not always got that right. This is not a party-political attack; it is me representing constituents whom I defend and whose interests have not been taken account of.
Recommendation 5 in “The keys to life” is:
“That in preparation for the legal duties imposed by the Social Care (Self-directed Support) (Scotland) Act 2013, local authorities and their NHS partners should work with private, voluntary and third sector agencies to ensure that people with learning disabilities have access to a creative variety of providers and supports and are assisted to think creatively about how outcomes can be met and what assistance they may need to develop control.”
I emphasise that it is about
“what assistance they may need to develop control.”
I ask members to indulge me, because I also will consider recommendation 27, which is:
“That by June 2018 the Scottish Government in partnership with local authorities, the Third Sector and people with learning disabilities and carers review and further develop day opportunities”.
I have missed out the second part of that recommendation because of time constraints, but I emphasise that the recommendation says that
“people with learning disabilities and carers”
should get to
“review and further develop day opportunities”.
In other words, as the Learning Disability Alliance Scotland puts it, the recommendations
“could have been strengthened from the start by re-emphasising the phrase ‘Nothing About Us, Without Us’”
in terms of the learning disabled.
It is in the light of those good principles being included in the new strategy and their having been a thread running through previous strategies that I look at Glasgow City Council’s approach. The council developed a plan to close three day centres for adults with learning disabilities. It did not consult them, but instead presented the closures as a fait accompli and consulted on the alternatives after the centres were closed. That is not about control; is about marginalisation of some of the most vulnerable people in society. It should not be allowed.
I stress again that carers and adults with learning disabilities in Glasgow have said that they are open to reforming day-centre provision and general learning disability provision within the city, but the council should speak to them. There should be a two-year moratorium on closures in order that they can engage positively with Glasgow City Council to map out the best service provision and support for adults with learning disabilities in the city.
To what do adults with learning disabilities have recourse when councils get it wrong? Councils have statutory duties in terms of consultation if they decide to consult. However, when they get it spectacularly wrong, as they have done in Glasgow—and, sometimes, elsewhere; it is not only about Glasgow—to what can those most vulnerable people whom I seek to represent have recourse?
There is a fantastic 10-year strategy in front of us, but we should also be mindful of the gaps that still exist and the need to represent the most vulnerable people in our constituencies.
Although I can be generous with seven-minute speeches, if members go much over that, I am afraid that the time will have to drop back down later in the debate.
15:09
In welcoming the comprehensive learning disabilities strategy, we should also remember, as Mary Scanlon did, that great policy document from the Parliament’s early years, “The same as you?”, which was completed with an exemplary consultation. For all of that, we should be grateful to Iain Gray.
I decided yesterday to do my own little consultation on the matter via Facebook and Twitter and got some interesting responses. Brian Cavanagh, who was a chair of social work in the former Lothian Regional Council, and is a great champion of inclusive services for people who have learning disabilities, said that there should be
“less strategies, more champions and consistency of process that parents, carers and service users can rely on across Scotland”.
I think that “consistency” should be an important word for the strategy.
Sue Kelly, who is a constituent of mine, said that we should
“Let people with learning difficulties speak for themselves. Give them a voice and listen to what they have to say. Give them the resources and the support they need to live independently”.
Independent living has to be right at the heart of the strategy.
Another constituent of mine, called Lesley Montgomery, who has championed integrated and inclusive services for people with learning disabilities for decades, got back to me with far more words than could be put on Twitter or Facebook. She knows all about the issue because she had a daughter, Kimberly, who had profound and multiple learning disabilities and who, sadly, died five years ago. I will mention two of the things that she said. She feels that there is still too much emphasis on day centres, rather than on living in the community with more stimulation and inclusion. On that she would disagree with Bob Doris; she has always championed integration in schools and in the community.
Lesley’s second comment relates to her experience of looking after her daughter when she had to go into hospital. She is concerned that there is still too much acceptance of invasive feeding, which her daughter never liked, so Lesley always made sure that she was there with her as much as possible, helping to feed her. She also says that she had to guard her daughter to make sure that she was not neglected and that the positive things that her daughter needed to have done were done.
That was more than five years ago now, so we hope that the situation has improved. She gave me her daughter’s personal hospital passport, which she carried every time she went into hospital. It contains comprehensive information about her daughter and was available to all the healthcare professionals. That is probably a good idea. I think that things have probably moved on; there have been a lot of positive developments, many of which Lesley Montgomery praises.
In relation to health, the minister mentioned the collaborative. I always support collaboratives, and I hope that good things will come out of that. The learning disability observatory also sounds like a positive development, as do other recommendations, including on epilepsy, which Bob Doris mentioned, and access to specialist neurological services. Things are getting better, but in this area—as in any other—we can never be complacent.
The last thing that I will say specifically about health is that I hope that the Government will work with the third sector. I know that Bowel Cancer UK has had a great initiative around bowel screening for people with learning disabilities, on which it wants to work with the Government. I hope that that offer is being taken up.
Clearly, there are big opportunities on health and social care, and the Health and Sport Committee is currently considering the Public Bodies (Joint Working) (Scotland) Bill. I found the Inclusion Scotland briefing useful. It suggests that we should strengthen recommendation 5, so that people with learning disabilities and their carers are, rather than account merely being taken of their views, involved in commissioning. That is an important theme that is coming through in a lot of evidence to the Health and Sport Committee.
I was going to intervene earlier, but I wanted to let Mr Chisholm finish telling his constituent’s story.
I agree with Mr Chisholm about the co-production commissioning model, which would put the carers and service users at the heart of the process.
Earlier, Mr Chisholm mentioned day centres. I am not wedded to a day-centre model. Would he agree that the principle is that there should be choice and control and that, if some adults make positive choices to use day centres, they should be able to do so?
I do not want to get into that controversy; I was just giving the views of my constituent. I think that the general thrust of policy has been towards more integration and inclusion. Clearly, however, the views of people with learning disabilities have to be central, and I would not disagree with what Bob Doris says about that, in general terms. I had a bit more to say on that subject, but I had better move on as we do not have unlimited time.
I want to say a bit about independent living and about advocacy in particular, because that is central to independent living. I have just lodged a motion on the subject, which I hope everybody will sign, and I notice that Jim Eadie is hosting a meeting on Thursday lunchtime with the Independent Advocacy Alliance Scotland, to which I hope members will go.
Members will be aware of the publication of the report by the Independent Advocacy Alliance Scotland—if they are not aware of it, they will be once they have signed my motion. Under the Mental Health (Care and Treatment) Scotland Act 2003, people with learning disabilities and people with a mental illness have a right to independent advocacy. It plays a key role in enabling the most vulnerable members of society to lead fuller and more independent lives. Within the context of this debate, independent advocacy is a crucial element of safeguarding and progressing civil and human rights, and of implementing the social justice agenda. It supports person-centred services, helps to avoid or resolve crisis situations and is effective in helping to move people’s lives forward. Commissioners must be open to partnership working and to working together to properly assess the number of residents who are eligible for that kind of support.
As is pointed out in “The keys to life”, health and social care partnerships must
“gather robust information on unmet eligible need”
and then ensure that tailored services are provided to best address individual need. Independent advocacy can then act as a route for those who have difficulties in communicating those needs to access the services that can create for them a more independent future.
“Having your say?” was a 2006 report that was produced by the advocacy sub-group of the national implementation group for “The same as you?” The report heavily recommended that the Scottish Government continue to encourage the development of local independent advocacy services, as a matter of priority. I have some concern that recommendation 32 talks about that being taken forward “by 2018”. There is a statutory obligation under mental health legislation, which I hope will ensure that everyone who has a learning disability and who wants and requires advocacy services will be able to access those services as soon as possible.
15:16
I am delighted to speak in the debate. The subject of learning disability is of considerable personal interest to me because I have a younger sister with Down’s syndrome who uses the services and who will be impacted by the new strategy.
I welcome the keys to life strategy and I particularly welcome its being the second learning disability strategy of the Scottish Parliament, which demonstrates the progressive nature of our Parliament. As others have mentioned, the strategy focuses on the health and wellbeing of people with learning disabilities. I want to address that directly.
Before I do that, I want to discuss the Labour amendment and comments by Mr Bibby about college education for people with learning disabilities. I have been involved in discussions about that with Enable and the Cabinet Secretary for Education and Lifelong Learning; there are genuine concerns about a diminution of college places for people with learning disabilities. On the other hand, learning disabled charities and advocates have been critical of some of the types of courses that were being provided in colleges for people with learning disabilities. The outcomes were not particularly good and the phrase “revolving door” was often used.
As a result of the issue having been raised previously in Parliament, I arranged for Enable to meet the cabinet secretary. A very successful meeting went ahead in March this year, at which the cabinet secretary agreed to fund the Scottish Consortium for Learning Disability and Enable to do joint work on developing a guidance document for further education colleges. It is important to remember that the decisions were made at college level before college reform.
At that meeting, it was agreed to support the roll-out of Enable Scotland’s transitions to employment model in the academic year 2013-14. Only this morning, I had an email from Jan Savage of Enable to say:
“I thought that you might like an update on the further education project we have been working on further to the Cabinet Secretary’s announcement”.
She went on to say:
“We have agreed partnerships with 7 Further Education colleges (Borders, Kilmarnock, West Lothian, Perth, Aberdeen, Dundee and Forth Valley) and are ready to deliver the Transitions to Employment programme.”
They just need to have it passed by the Scottish Further and Higher Education Funding Council. There have been difficulties at college level and we must not take our eye off the ball, but it is important to acknowledge that those issues have been addressed by the Government and that progress is being made.
I very much welcome the transitions to employment project. There is no difference between us on that front. It will ensure that more people have positive outcomes.
Would Joan McAlpine nevertheless accept that there are fewer college places and less money going in, and that if we use money to fund more of the transitions to employment projects, we could get better outcomes? It is not either/or; we really need both.
Well, £250 million is a significant sum of money. It is important that the cabinet secretary has listened to what Enable Scotland and the Scottish Consortium for Learning Disability are saying and has ensured that the quality of the courses that are provided is improved. Colleges have an obligation to deliver equality outcomes. If colleges are not doing so, the funding council should be alerted to that, because everyone is entitled to an education.
On the keys to life strategy, I want to address the very alarming statistic that people with learning disabilities live on average 20 years less than the general population. I particularly welcome recommendation 11, which instructs
“the Scottish Learning Disability Observatory ... to develop a better understanding of the causes of unnecessary deaths”.
Of course, the reasons for early death are complex. People with learning disabilities can have, for example, very serious congenital heart disease and thyroid problems. In addition to major health challenges, learning disabled people may not in the past have received the treatment that they needed to address relatively minor health problems, which can, as a result, become major health problems. That can be partly explained by the difficulty in getting them the specialised treatment that they need. For example, how do staff take blood from a person whom they suspect is anaemic or is suffering from some other condition if the person is petrified of needles and lacks the capacity to rationalise the need to give blood? What do they do if a person needs an operation to improve their quality of life but is phobic about hospitals? How do they reassure a person who has difficulty in communicating their fears or describing their symptoms?
I have experience of families who have suffered from such problems. Twenty years ago nothing was done and such families were isolated and marginalised. Now we have specialist community learning disability teams, who have made an enormous difference to the healthcare of that section of the population. That is a result of the previous strategy.
I have direct experience of the Inverclyde community learning disability team at the Elizabeth Martin clinic, in Larkfield, and I praise the team, which has made an enormous difference to the lives of the disabled people with whom it deals. Consultant psychiatrists, psychologists, community nurses, physiotherapists, occupational therapists, speech and language therapists, counsellors, multidisciplinary social workers, dieticians and chiropodists work together. It is important that people who have a learning disability have access to familiar professionals and continuity of care, in an holistic approach.
The delivery of medical care to some people who have a learning disability can be a slow process that requires an enormous amount of patience, understanding and flexibility on the part of health professionals. I know a learning disabled person who broke her foot and had to have it in plaster. The traditional way of removing a stookie—to use a good Glasgow word—is for the person to go to hospital and have it sawn off, but that would have been terrifying for the individual. However, the flexible support that the specialist nurse and physiotherapist could offer was such that the team was able to remove the plaster in the individual’s home. That is just one example of an advance that has been made.
I am running out of time.
I am afraid that you have run out of time.
I want to draw attention to the GP contract. Some people who have a learning disability have communication difficulties, so it is important that they get longer GP appointments. I praise that recommendation.
15:24
I thank everyone who has been involved in developing the new learning disability strategy, “The keys to life”. In particular, I thank citizens of Scotland who have a learning disability, who have been at the heart of the strategy’s development.
Our main focus today is to debate the new strategy, but first I want to contextualise what it means to be a Scottish citizen and have a learning disability. The exact number of people with a learning disability in Scotland is unknown, but according to published statistics approximately 16,000 school-age children and young people and 26,000 adults have a learning disability and require support.
Our population of citizens with learning disabilities is not a homogeneous group. Some people with learning disabilities will require just a little support, while others with more complex needs will rely entirely on family members and paid carers for all aspects of daily life.
What is true is that every person with a learning disability is an individual like you and me, with hopes, aspirations, dreams and rights. Like many nations, we have a shameful history of policy and law that aimed to reduce the social problem of learning disability through segregation, isolation and—unthinkable today—sterilisation. In finding a solution to the historically viewed burden of people with learning disabilities, we have come from the acceptable place of segregation in the earlier part of the 20th century through recent manifestations of community care and eventually to today’s position where citizens with learning disabilities have the right to individualised budgets and personalised support. There is therefore much to welcome in this new learning disabilities strategy.
We of course believe that every citizen has the right to live longer, healthier lives. I believe that providing person-centred, safe and compassionate care that protects individual rights and empowers independence is a fundamental duty of our society, our services and indeed our Government. That is why I firmly support this new strategy. It does not purport to suggest that all is well; it acknowledges both the distance that we have come since the publication of the first learning disabilities policy in Scotland, “The same as you?”—and I must heap praise on the previous Executive for bringing that forward—and where our collective journey should take us to in future.
The strategy acknowledges that many people with learning disabilities would like to work, live independently, have meaningful relationships and feel safe within their communities. However, almost 9,000 adults with learning disabilities in Scotland live with a family carer, and 14 per cent of them with a family carer aged over 50; fewer than one in 20 adults with a learning disability is in any form of paid work; and research has shown that two out of every five children born to parents with learning disabilities are permanently removed from their care.
As I mentioned in my intervention on the minister, the Education and Culture Committee’s report, which was published yesterday, provides evidence from learning disabled parents about their absolute desire to be treated as individuals and to have their cases treated on a case-by-case basis. They felt—with some justification—that the permanent removal of 40 per cent of children born to parents with learning disabilities was not something that happened in the normal daily run of things.
There is still much work to be done. Nevertheless, the Social Care (Self-directed Support) (Scotland) Act 2013, which was introduced earlier this year, will empower individuals to have greater control over decisions affecting their lives, including the support required to live as independent, as safe and as meaningful a life as possible.
As I have said, the exact number of people with learning disabilities in Scotland is unknown. I would now like to turn my attention to that issue and, indeed, the issue that makes up the main body of this new strategy—health inequalities.
I have read with dismay the early mortality statistics for people with learning disabilities that other members have mentioned, with some reports from England suggesting that men die up to 13 years earlier and women up to 20 years earlier. The important point is that most of those deaths were unexpected, premature and avoidable. I am also aware that those findings are supported by the determinations of a number of fatal accident inquiries in Scotland. That is simply unacceptable, and it is why I whole-heartedly endorse the strategy’s recommendations that aim to understand the causes of such unacceptable early mortality rates and place a duty on local NHS partners to implement change.
We have moved from our shameful out-of-sight, out-of-mind service provisions to a position of inclusion and, I hope, individuality—or have we? People with learning disabilities remain invisible in our routinely collected health data, and we are unable to measure, trend or predict the health of our citizens with learning disabilities. That is why I welcome and warmly endorse the creation of the Scottish learning disability observatory and eagerly await its outputs. It should provide us with the evidence and information that we require to take further action to right this unacceptable position.
The strategy also acknowledges the differences in health presentations between Scotland’s general population and people with learning disabilities; acknowledges the difference in the leading cause of death and in cancer presentations; and acknowledges that public health measures for all citizens of Scotland that have been developed with the best of intentions can in fact widen the health inequality gap for citizens who have a learning disability.
I warmly welcome the strategy’s recommendations, which seek to address the matter. I particularly welcome the recommendation to seek to develop a HEAT target for our NHS to ensure that people with learning disabilities are visible in routinely collected data and importantly, as other members have mentioned, to ensure that the new GP contract in Scotland will best meet the needs of our citizens who have a learning disability.
The new strategy further acknowledges that people with learning disabilities have the right to access the full range of services that all citizens of Scotland access. It also rightly acknowledges that, from time to time, some people with a learning disability will require reasonable adjustments, including access to specialist support to enable access to mainstream services.
Citizens of Scotland who have a learning disability have the right to safe, effective and person-centred healthcare, and we have the responsibility to ensure that that is delivered every time. Citizens of Scotland who have a learning disability have the right to work, and we have the responsibility to ensure that that happens. Citizens of Scotland who have a learning disability have the right to affordable housing with the right support, and we have the responsibility to ensure that that is delivered. Finally, citizens of Scotland who have a learning disability have the right to feel safe. We have the responsibility to ensure that that is the case not just some of the time, but all the time.
I very much welcome the new learning disability strategy and look forward to all citizens with learning disabilities in Scotland being given the keys to their lives.
15:31
This Parliament and this country have a strong track record of promoting social inclusion, diversity and equality of opportunity. The European convention on human rights has been woven into the very fabric of devolution, having been given real legal force by the Scotland Act 1998 and the Human Rights Act 1998.
We all aspire to become a better and more inclusive nation. From education to employment and every other aspect of life, we want people with learning disabilities to be just as included as everyone else in society. Last week’s debate on disabled people in politics reminded us that we still have some way to go if we are to meet those aspirations—so, too, does the on-going debate about welfare reform—but we are making progress and attitudes are changing. As the minister says in his foreword to the new strategy, people with learning disabilities themselves believe that they are more accepted and valued in their communities.
With the strategy, we must build on the good work that has been done since devolution and bring the Parliament closer to meeting the aspirations that we share for people with learning disabilities.
The first years of this Parliament saw “The same as you?” published. It was the first major policy review looking at learning disabilities, and it was a comprehensive, well-received document. Crucially, it approached the issues faced by people with learning disabilities as rights-based issues. That is acknowledged in both the current document and in the Scottish Consortium for Learning Disability’s evaluation of the original strategy. Let me be clear: a rights-based approach was right then and it is right now, and a continuation of that approach is to be welcomed across the chamber.
The other instance of welcome continuity is in the scope of the strategy, which covers the whole lifespan of the individual. For the 16,000 school-age children and young people with learning disabilities, the 26,000 adults with learning disabilities and the adults who may no longer self-define as disabled, the strategy must be there from birth to old age. For people of all ages and from every generation, the ambitions and the policies that are set out in the document must reflect and speak to the needs, hopes and rights of that diverse group.
The fundamentals behind the strategy are sound. However, as Rachel Le Noan from Down’s Syndrome Scotland said in The Scotsman just the other week, the devil is in the detail. Specifically, it is in the implementation. How will the objectives that are set out in what is undoubtedly a substantive document be turned into a reality by the Scottish Government, public bodies, local authorities and the third sector?
I recognise that the Convention of Scottish Local Authorities, the NHS, the third sector and others have been partners in the development of the strategy. Their on-going partnership is absolutely critical as we take this agenda forward. However, we cannot ignore the context in which the strategy has been developed and in which it must now be implemented. Every one of those partners faces huge pressures on their budgets.
There are wider changes, too, including the implementation of self-directed support, the integration of health and social care, and welfare reform. The background to the new strategy is therefore different from the background to the original one. Some of those changes will prove to be positive, while others—such as the welfare cuts—will not, but I hope that we all agree that, as we consider each of the 50-plus recommendations that have been made, we must be mindful of the pace of reform and ensure that we do not lose sight of the individual person or their rights.
My final point is about the strategy’s welcome focus on the health of people with learning disabilities. People with learning disabilities are more than 20 times more likely to suffer from epilepsy and are more likely to experience illnesses that may require hospitalisation, following which they may experience delayed discharge. People with Down’s syndrome are particularly susceptible to hypothyroidism as they get older. The needs of people with learning disabilities can be complex and diverse, and those who may not be able to articulate their health complaints face added challenges.
Therefore, I stress how important it is that the NHS understands learning disabilities. It is also important that independent advocacy is provided to help people with learning disabilities in their interaction with public services. Even in these tough times, we should aim to develop a more person-centred service for that section of the population through understanding and communication.
The needs of people with learning disabilities are multifaceted and the inequalities that they face are rarely one dimensional. The strategy sets out a number of ways in which we can address those needs, build on the rights-based approach that has informed so much of the work in this area since devolution, and improve the quality of life of tens of thousands of people with learning disabilities all across Scotland.
I call Dennis Robertson, to be followed by Jim Eadie.
15:37
Thank you, Presiding Officer. When you extended the time for speeches to seven minutes, I put my hand in my pocket and took out my throat lozenges. I certainly hope to be able to attain six minutes.
The debate is an important one, and it is about people—individuals. We refer in a generic way to “people with learning disabilities”, but the spectrum is vast. I want to touch on one or two aspects of individuals who have learning disabilities.
Recommendation 1 in “The keys to life”, which looks at equality impact assessments, refers to “dignity, equality and non-discrimination”. If I were writing that recommendation, I would include “respect”, because we need to ensure that we are respectful to those with learning disabilities. In drawing up a strategy, we should be respectful to them: it is not a question of creating a society for people with learning disabilities but a question of creating a society that they are an integral part of. They should be shaping their future.
It is all very well that we sometimes articulate on behalf of people with learning disabilities. Sometimes it is right and proper for us to do that, as people with learning disabilities may not always be able to articulate exactly what they want because of their communication difficulty, but—to put it simply—we should try to create a society for individuals. Mary Scanlon mentioned person-centred care. We should always ensure that, when a single shared assessment is carried out, there is an individual care plan for the person concerned that allows them to live in our community and to be part of our society.
Of course support will be needed, and there is a need for an infrastructure. We must ensure that there is a structure in place to provide quality assurance. Stuart Maxwell said that, when it comes to the collection of data, the person with a learning disability is often invisible. That cannot be right.
What I would say to the minister is that, when we are collecting the data, we need to ensure that we are not just saying, “Here we have a person with a learning disability,” but are saying that it is a black or ethnic minority person with a learning disability, a person with sensory impairment with a learning disability, or a person with whatever condition with a learning disability. We need to ensure that we cross-reference and collect the information that will be important in ensuring that we develop the society that we need for our people with learning disabilities.
I remember working with a young lad many years ago in Inverclyde in my days as a very young social worker. That young lad used to lash out every time that he went out to his day centre. He was physically abusive, kicking, punching and biting. Do you know why? His shoes were too tight. He could not communicate that, when people put his shoes on, they were hurting him. He did not have the ability to communicate that through speech, but it was obvious for those who wanted to take the time to look carefully that, every time that he put on a certain pair of shoes, he had a reaction. It was simple.
I commend the work by Optometry Scotland and opticians throughout Scotland in conjunction with RNIB Scotland to ensure that people with learning disabilities have their sight checked. We have found out that over 11,000 people with learning disabilities have a sight impairment. Quite often—again, this is very simple—giving a person a corrective lens in spectacles can enable them to see clearly, which can have an immense impact on their lives. We have found out that a person has been able to recognise a member of their family, a carer, the food on their plate and their favourite jumper. Why? Because they have been given the corrective lens that they needed. No one had previously thought of taking the individual to get their eyes tested. They just accepted that the person was knocking things over, screwing their eyes up and unable to recognise a member of their family—that cannot be right.
Sometimes we look for the complicated when we should be looking at the simple and the most obvious. I welcome the strategies, but I am not sure that we need 52. When reading the strategy document, I kept asking myself, “Did I read that earlier?”, and kept saying to myself, “It’s not the quantity but the quality.” I am hopeful that the Government, with cross-party support, will deliver for people a strategy and a document, and that, at the end of the day, we will deliver for individuals with learning disabilities in Scotland. It is about the individual, and that is what we should always focus on: the individual, with their specific need.
15:43
I am grateful for the opportunity to take part in this debate and to follow a number of very impressive contributions on the quality of life of people with learning disabilities. For most of us, learning is an essential part of life, but for many adults in Scotland—27,000, to be exact—it is something that can be difficult, if not impossible. That is because they have a learning disability. It is often a lifelong condition that starts before adulthood and it can mean that they need help and support to understand information, learn new skills and cope with living independently.
Dennis Robertson, who has just spoken so eloquently, reminded us that this debate is about individual people. Unfortunately, at every stage of the lives of people with a learning disability through to old age, they face discrimination and barriers that prevent them from living their lives to the full.
Margaret McCulloch spoke about the role that the Parliament has played in addressing social exclusion and the way in which human rights are woven into the fabric of this institution. The barriers that people face in their lives should not and need not exist. I firmly believe—I know that, in this, I am joined by my colleagues across the chamber—that society is judged on how it cares for its most vulnerable citizens. Surely those who have a learning disability should enjoy the same rights to employment, housing, education and healthcare as the rest of us. They should be at the heart of society, not outside it.
Margaret McCulloch spoke about the European dimension, and the United Nations has the same belief. Its “Declaration on the Rights of Disabled Persons” makes the point, saying that they must be given the chance to enjoy a decent life that is as normal and full as possible. However, according to Enable Scotland, the country’s largest voluntary organisation for people with learning disabilities, fewer than one person in 20 in this category in this country are in employment, although that figure excludes those in sheltered workplaces such as Remploy.
There are a number of specific challenges around employment, so I was particularly pleased that the minister addressed the collaborative work with Skills Development Scotland, NHS boards and local authorities, all of which is designed to meet those challenges. We can all agree with the aspiration and ambition that are set out in the strategy—that people with learning disabilities, with appropriate support, are able to work in mainstream employment that is suitable to their skills and capabilities. The strategy focuses on helping people with learning disabilities to enter mainstream employment wherever possible.
That is surely the right approach, but there continues to be a role for supported businesses, which is why I welcome the Scottish Government’s independent review of Scotland’s supported businesses. I look forward to further action being taken to identify the obstacles and barriers that they face and the support that they need to transition from organisations that are dependent on grant funding to ones that can grow and prosper as viable commercial businesses or social enterprises.
A number of members mentioned the importance of education, and the strategy highlights a number of examples of good practice in that area. In Edinburgh, I am aware of the work of Enable Scotland, which is delivering the stepping up programme in five schools across the city—Boroughmuir high, Tynecastle high, Leith academy, Pilrig Park school and Drummond community high. Each year, Enable Scotland engages over 40 young people with learning disabilities from secondary 4 to S6 in Edinburgh schools. Those young people are supported in developing the skills and confidence to make a successful transition from school into employment or training. Enable Scotland provides on-going support to both trainees and employers to ensure their long-term success.
That project is part of a nationwide schools programme that is funded by Inspiring Scotland, which Enable Scotland has been delivering since 2009. It has supported more than 450 pupils who have learning disabilities to make positive transitions from school into employment, vocational training and apprenticeships.
Scotland’s colleges have been mentioned in the debate. They have a social obligation to the communities in which they operate and a duty to do all that they can to ensure that people with learning disabilities can access educational opportunities and fully participate in society. I was pleased to secure a meeting last year with the Cabinet Secretary for Education and Lifelong Learning, Michael Russell, and the charities Enable Scotland and Learning Disability Alliance Scotland, which represented people with learning disabilities. Along with my parliamentary colleagues Jackie Baillie and Joan McAlpine, we discussed the provision of courses and student numbers across Scotland. Joan McAlpine mentioned the further discussions that she has been involved in with the cabinet secretary and those charities. As a result of all that activity, the Scottish Government has listened and taken steps to ensure that the colleges’ outcome agreements reflect the needs of people with learning disabilities. That is being backed with additional resources.
Bob Doris and Stewart Maxwell emphasised the importance of gathering good data and measuring trends on unnecessary deaths, health outcomes and the allocation of social work resources. Bob Doris spoke about including an indicator in the general practitioner contract, and Joan McAlpine spoke about the need for longer appointments for people with learning disabilities. I hope that the minister will take on board both those constructive suggestions.
In a briefing to members, Enable Scotland said that the collection of data represents “a clear opportunity”. It stated:
“we are hopeful that the Scottish Government and other partners will capitalise on this opportunity to support the monitoring of the achievement of the objectives of the Keys to Life.”
We can all endorse that.
Malcolm Chisholm spoke about the important role of independent advocacy services. I echo his concern that 2018 appears at least at first glance to be a very long-term timescale for agreeing an action plan that involves all the key stakeholders and the Scottish Independent Advocacy Alliance. I also welcome his advertisement for the event that I will host in the Parliament on Thursday this week.
No political party has a monopoly of concern for people with learning disabilities, and no Government of any political complexion in Scotland or the UK has done enough to address the needs and concerns of that important and marginalised group. I welcome the leadership that the minister is providing, whole-heartedly support the strategy, and look forward to further action on behalf of people with learning disabilities.
15:51
It does not quite seem that 13 years have passed since the last time we discussed a strategy to support people with learning disabilities. I admit that that point was brought home to me in looking back through the minutes of the Education, Culture and Sport Committee and our inquiry into special needs from that time. I discovered that Fiona McLeod and I are the only two members of that committee who are still here. When I read the 2001 report, I saw that another parliamentary colleague—Iain Gray, who was the minister responsible for bringing forward “The same as you?”—noted at the time that it had been 20 years since the previous strategy had been published and that little progress had been made since then.
The good news—and the reason that it does not feel like 13 years since “The same as you?”—is that we have moved forward. There is a far more inclusive approach to our education system and from employers across the country, and there is a much greater focus on giving people the resources and support to get on in mainstream activities. Perhaps most important of all, the concept of long-stay hospitals for people with learning disabilities is behind us. I think that Bob Doris made that point earlier.
It is also fair to say that the change has been less groundbreaking than we would have liked and that some of the challenges that were highlighted then are still with us. We still have the challenges of how to give people with learning disabilities a voice in choosing their own future and greater access to mainstream services—Stewart Stevenson made that point; how to reduce the conflict or tension between families that are struggling to cope and public authorities that are struggling to meet their needs while balancing the books; how to help those with additional needs to improve themselves through access to continuous education; and how to have clearer lines of co-ordination between services and provide the physical support to make inclusion a reality.
The report that we are debating is an excellent document that has already been warmly welcomed by those with a learning disability and the many hundreds of organisations that work with them. It is particularly useful because there is a clear recognition throughout the report of the need for joined-up solutions. We often call for those as politicians, but we rarely figure out how to deliver them.
Crucially, a strategy will take us only so far unless the resources that back it up are aligned and all levels of the process work towards the same goals. Across the chamber, we share a noble ambition for children to be educated in the environment that suits them, be it mainstream or specialist. It may not take very much support for a young person to thrive in a mainstream setting with all the benefits that that brings, but when that support is not in place, it can become impossible to cope with that environment.
In its briefing, Enable Scotland tells us:
“people with learning disabilities are perhaps the most marginalised and socially excluded group in our society”.
Children must feel completely isolated where help with communication difficulties is not available. A constituent recently contacted me about her daughter, who has Rett syndrome, which is a neurological disorder. She has struggled for many years to get the support with communication that she requires. That is particularly frustrating because it turned out that that young girl is cognitively much more able than any of her doctors originally suspected. She is able to communicate and has demonstrated an ability to make progress in literacy and numeracy, but she is unable to make the best use of the resources that are available because she does not have access to enough speech and language therapy.
The Royal College of Speech and Language Therapists estimated just last year that 250,000 Scottish children, young people and adults have speech, language and communication needs. Based on the numbers of speech and language therapists in Scotland, we can work out that there are 262 people with a speech and language need for every such therapist.
My constituent wrote to say that,
“Alas”,
her daughter
“is not alone”
and that her
“story is typical.”
She went on to say that her daughter’s special needs school has a roll of just over 100, and that
“The great majority of the pupils at the school require SLT support at some level. There are 2 SLTs allocated to the school but they attend only once a week. This means that ultimately no-one is receiving any input from them—the caseload is simply too big.”
That is not only a loss for each individual who is affected or held back from making the most of their potential; we are all, socially and economically, the poorer for it. A recent study of unemployed young males found that more than 80 per cent were described as language impaired, in comparison with just 1 per cent of the UK’s general population.
The minister—and Mary Scanlon—made the point that people with learning disabilities want to work. The strategy that is before us today mentions communication 35 times, but does not give any recommendations on how to improve the provision of speech and language support for people with learning disabilities. I would be interested to know what more the Scottish Government can do to support those young people.
Some colleagues picked up on the point that the Scottish Government’s strategy is at odds with reality. I am grateful to Enable Scotland, which noted some figures that would shock all of us who believe that further education should be open to all.
Courses for people with additional support needs have been halved since 2007-08. The biggest cuts have been in the past two years, with a 46 per cent cut. The amount of staff who are teaching people with additional support needs has been cut by 16 per cent in the past two years, and the number of adults with learning disabilities who are attending further education for 2.5 days per week or fewer has fallen by almost 20 per cent in the past year alone. Just last week, that issue was raised in the cross-party group in the Scottish Parliament on colleges and universities.
I am conscious that one of the phrases de nos jours is that those with the broadest shoulders should bear the greatest burden. I have heard that expression from the First Minister, the Prime Minister and leading figures in my own party, and in every case I do not doubt the genuine intent. However, the reality is that it is not the most resilient but the most vulnerable who bear the greatest burden of the economic difficulties, welfare reforms and education cuts. It is those with learning difficulties who are displaced by greater levels of unemployment and underemployment, and it is courses for those with additional needs that have been disproportionately cut.
I am proud of the fact that, through years of expansion and growth, the Parliament has improved services and reformed attitudes to people with learning difficulties. The real test, however, is how we respond to and protect those gains in difficult times.
I would like to end on a positive note.
The member should be closing now.
I will follow the example of Jim Eadie and my colleague Malcolm Chisholm, and mention a forthcoming event. At lunch time on Wednesday 9 October I will host a presentation on behalf of Lorna Walker, who has worked all her life with people who have learning difficulties. She has produced an online support manual on dealing with those with additional support needs, which is being used by half of the councils throughout Scotland, in addition to gaining interest from around the world. Unfortunately, there has been no interest so far from the Government, and I urge the minister to come along to the event if he can.
I support the strategy and the Labour amendment.
15:58
I welcome the debate and the strategy, “The keys to life”, which builds on the strategy, “The same as you?”, which was published in 2000. I agree with Mary Scanlon that, in this building, we tend to strategise till the coos come home, so we must decide what we are going to do with the very good information that is in front of us.
We need to ensure that there is equality and fairness in society, as Dennis Robertson—and Stewart Stevenson in his intervention—mentioned, and we need to empower people with learning disabilities.
I was at an event yesterday that was organised by the PACE Theatre Company and Police Scotland to address the issue of disability hate crime. As Margaret McCulloch said, we have moved very far on such matters through the work that has been done since the publication of the 2000 strategy. The event showcased a very powerful drama about someone with learning disabilities living in the community, which will tour schools in Renfrewshire to get the message out. It showed how a 24-year-old man had difficulties with dealing with autism, and with the fact that some people were not quite so understanding about his learning disabilities. The drama was powerful and the ending was happier because the mechanisms were in place for that individual to get out of the difficulty they were in.
As I watched the play, I wondered whether the ending would have been the same before 2000 and the strategies that we have put in place since then. Would those mechanisms have been available for that individual? I think that it would probably have been difficult for him. “The same as you?” started everything off in 2000 and the strategy was successful in shifting the balance of care to support more people to live in their communities. That is exactly what the play discussed.
It is important that we encourage local authorities to review their day care centres. As a councillor, I had to go through the difficult process of reviewing day care centres and look at providing a new model because some individuals prefer a form of day centre care. In the Mirin at the Lagoon leisure centre in Paisley, we now have a modern and different facility, but the individuals involved at the time and their parents did not want to move because they were comfortable where they were. However, things have moved on and worked out. Although it is not easy, sometimes politicians have to make the decision to look at new ways of delivering services. That was an example of making progress by identifying the needs of individuals and seeing how we could make things better for them.
The flexibility that I like was mentioned by the minister when he talked about the Social Care (Self-directed Support) (Scotland) Act 2013. That gives the individual the flexibility to be, live and work within their community and run their life on their own instead of people telling them how they should be receiving support. They, or their family members working with them, are the ones who decide and can tell everyone exactly what they are looking for. That is an extremely important part of this debate. We can sit here and talk about what we think is best, but we have to engage with the families and people who have learning disabilities themselves.
Mention has been made of the unfair Westminster welfare reforms that will affect some families who will have great difficulty in dealing with things like the bedroom tax, although the Scottish Government has given £20 million to support them. However, we have to look at ways in which we can continue to support such families. Again, we see that it is a tale of two Governments, one of which is supporting its people while the other seems to be having difficulty with that.
Coming from a local government background, I like recommendation 3 on the commissioning of public services. It says:
“community planning partners should ensure that local arrangements for joint commissioning are developed across relevant partner agencies and service areas to support the delivery of agreed outcomes”.
I understand that that is the way forward, but we need to find a way of packaging it for individuals. I have sat in council meetings and engaged with the public to tell them about the single outcome agreements and the like, and we have tried to get the language right.
Mr Adam mentioned recommendation 3 and his support for it. We were talking about enabling, empowering and giving a voice to people with learning disabilities. Does the member think that those people with learning disabilities understand recommendation 3?
I would not like to answer that myself, but that is what I was trying to say. We need to ensure that we speak in a language and package information in a way that people can engage with. It is all well and good for us to talk about such things, but we have to ensure that it is real and relevant to the individuals whom we hope to help. That is why I said that we have to ensure that individuals get involved at that point.
Some of the other recommendations are important. I have been involved in the community planning process at the local government level and I have seen the difference that it can make when we engage with groups and individuals. Again, it is not so much about putting the documentation in front of people as it is about talking to them and finding out exactly what they are looking for and what they need. Unfortunately I no longer have the time, but I used to be able to spend all day listening to individuals, discussing their issues with the local community, and then deciding what we can do. When we are talking about these issues, we cannot just leave the bits of paper with people—Dennis Robertson is right. The intention is correct, but we have to package everything properly.
With regard to health, recommendation 11, which was mentioned by Joan McAlpine, says:
“That the Scottish Learning Disability Observatory will work to develop a better understanding of the causes of unnecessary deaths of people with learning disabilities.”
Most of us find such deaths difficult to comprehend and understand. In general we tend to accept that they happen, which is wrong. We need to find out why that is and how we can develop a better understanding of the causes.
“The keys to life” offers us a direction of travel. Much has been improved in our communities over the years but there is still much more that we can achieve.
16:05
I, too, welcome “The keys to life”, which builds on “The same as you?”. There are some comprehensive sections in the strategy, while others possibly need more work to progress.
The health section of the strategy highlights the challenges and the health inequalities that are experienced by people with learning difficulties. Some of those are due to health difficulties that form part of an individual’s disability, but others are due to poor communication between those with learning disabilities and health professionals. I am really pleased that NHS Western Isles is leading the way in training staff in better communication with people with learning disabilities and that that good practice is being mainstreamed throughout Scotland.
We need to remember, however, that people with learning disabilities are the same as everyone else, in that their wellbeing and fulfilment is key to a healthy life. We must ensure that we understand what causes inequalities so that we can develop services to improve health and prevent illness. Bad health stops people with learning disabilities from enjoying activities such as employment and education that contribute to a fulfilled life, but it is the same the other way round, in that lack of fulfilment can impact on somebody’s health. Therefore, although improving communication between people with learning difficulties and healthcare professionals is important, it cannot end there. The communication channels need to be improved across the various services that each individual interacts with. That will help to identify problems that occur and also help the various agencies and individuals to work together quickly and effectively to resolve problems.
I was really heartened to see that some health boards—Inverclyde, for example—were targeting their public health information at people with learning disabilities and helping them to take on that message. However, we need the specialist services as well as communication, because communication can go only so far. The specialist services need to be accessible and properly funded to enable individuals to be supported to improve not just their health but their general wellbeing.
This strategy is happening against a backdrop of local authority cuts that are leading to increased care charges. Some people are being charged up to 100 per cent of their care package. We have heard others talk about the human rights of those with learning disabilities. Surely the ability to live your life to the full must be a human right and we must look at those charges to ensure that nobody has a funding issue when it comes to living their life to the full. There is also the backdrop of welfare cuts, which very much impact on those with learning disabilities. That is a work in progress and I hope that the strategy will seek to tackle that.
We have had some successes in looking at health issues for those with learning disabilities, with an emphasis on health conditions that are part of a wider condition. For instance, people with Down’s syndrome now have an extended life expectancy that has increased a great deal over the past decade. I welcome the further research into that area because I think that we can do a lot that will improve life expectancy for people with different conditions. That area of the strategy is to be welcomed.
I will turn briefly to self-directed support. Although it is welcome, there is a concern that sometimes self-directed support packages are an opportunity to cut support packages. That is a concern for both carers and people with learning disabilities. We must also recognise that people with learning disabilities are vulnerable, so they need safeguards in the system to protect them. Those with learning disabilities often fall prey to unscrupulous people who would abuse their relationship in order, for example, to take their benefits—the person with learning disabilities is then abandoned and left with nothing. Under self-directed care, personal assistants need no qualifications to carry out their roles, so we need to ensure that that role cannot be used by people who would prey on those with learning disabilities as a way of making money out of them.
There must also be safeguards in assessing need. I have heard of a case in which a self-assessment was completed for a person with learning disabilities without that person even being present. Had the person with learning disabilities been present on their own, however, they might have downplayed any needs because, as we know, many people with learning disabilities crave independence—they have been wrapped up in cotton wool by friends and families for too long and really want to decide for themselves. With self-directed care, a real challenge that we face is to empower individuals while ensuring that there are protections for them as well.
I will also mention supported workplaces, which are integral to this issue. When I spoke to staff at Café Artysans, which is a social enterprise cafe in Inverness that provides training places for people with learning disabilities and other issues that require supported employment, they told me that not as many people can come through that service as they would wish because of a lack of jobs in the community that people can move on to. Most public bodies have policies about employing disabled people, but such posts are rare, so people who are ready to move on from supported employment and who could hold down a job cannot do so.
If we are serious about the issue, we need to ring fence more jobs for people with learning disabilities. It is disappointing that the number of people in the ring-fenced jobs that are currently available dropped by 318 between 2011 and 2012. We need more of those places, not fewer. The Scottish Government could perhaps lead the way by ring fencing jobs within its own organisation as well as encouraging agencies—and, indeed, contractors—to do the same. As well as helping people with learning disabilities to reach their full potential, which is crucial to their sense of wellbeing, such a move would play a role in educating the wider population about what people with learning disabilities have to offer. Yes, we need supported workplaces, but we also need mainstream jobs for them to move on to.
Coming quickly to the end of my speech—
I would be grateful if you could draw to a close, please.
When I attended a carers forum question and answer session last week, I heard of one person in supported employment for whom the charge for the placement was more than the person earned from taking part. That goes a long way towards demeaning that person’s contribution to society. In looking at the wider health issues, we need to tackle issues of wellbeing and improve health in the long term.
16:13
I think that we can take it as our starting position that all members in the chamber agree on the need to get it right for those who have a learning disability. I will not re-rehearse the precise figures, which have already been set out, but the significant number of people in Scotland who have a recognised learning disability deserve the support of this Parliament to live full, active and dignified lives. On that basis, it is understandable that there has been much consensus across the chamber.
I very much welcome the new strategy, “The keys to life”. One of its useful findings is that
“People with learning disabilities tell us that they are generally much more accepted and valued in their communities than they ever were before.”
I am sure that we all regard that as positive but, of course, we cannot fall back into complacency, as Malcolm Chisholm rightly pointed out. We can all agree that we need to do more to assist those with learning disabilities.
In that regard, I very much welcome the Conservative amendment—not something that I am inclined to say regularly—especially its reference to the need to consider
“that particular attention should be paid to the transition between child and adult services”.
All members will be aware that that is a particular challenge for young people with learning disabilities and that the post-education destination outcomes for such individuals are not as good as those for the population more generally. It is therefore important to consider how we can improve on that record.
A good example of how that can be done is Glencryan school, a special educational needs school in my constituency. It does not deal only with pupils with learning disability, but such students form a part of the school population. I have been impressed with the school’s efforts to equip pupils with practical vocational skills in a range of areas. It runs a bistro and a launderette, to which customers from the local area can come, and in which the students undertake activities. That gives the young people real skills and, equally important, confidence in themselves and their abilities. Some of the school’s students have certainly had more positive destinations compared to what might have been the case in the past. It is very much a success story.
It was disappointing to learn about the son of Mary Scanlon’s constituent. I certainly know, from bitter experience of having to assist constituents, that things do not always go right in my area, but I wonder whether, if that particular young man had attended Glencryan school, his experience might have been rather better than the disappointing experience that Mary Scanlon set out. A lot can be learned from the Glencryan experience. I have been pleased to welcome Angela Constance in her capacity as Minister for Youth Employment to the school in the past. If the Minister for Public Health fancies the short trip from his Falkirk West constituency, I am sure that we can arrange that, too.
I recognise that the challenge of ensuring better outcomes for young people with learning disabilities is dealt with in “The keys to life”. In the “Break the stereotypes” section, recommendation 39 is that, by 2014, stakeholders should
“provide earlier, smoother and clearer transition pathways (to include accessible information on their options, right to benefits and Self Directed support) for all children with learning disabilities to enable them to plan and prepare for the transition from school to leavers destination.”
Recommendation 41 is that the learning disability implementation group should work with a range of organisations
“to develop ... supported employment opportunities for people with learning disabilities and that those organisations should lead by example by employing more people with learning disabilities.”
Recommendation 42 talks about developing work skills for young people with learning disabilities in tandem with the third sector. Those are concrete examples of how the strategy that we are debating can effect meaningful change for those who have a learning disability and particularly those who are in transition from childhood to adulthood. I look forward to progress on those ambitions being reported back to Parliament.
Recently, we had the 60th anniversary of the European convention on human rights. Human rights are of course important to everyone, but they are particularly important to those who might be considered to be more vulnerable. I am glad that “The keys to life” recognises the issue of human rights. The “Independent living” section encompasses the sense of how the human rights of those with learning disabilities can be embedded. It begins by saying:
“The Independent Living in Scotland project describes independent living as ‘disabled people of all ages having the same freedom, choice, dignity and control as other citizens at home, at work and in the community. It does not mean living by yourself, or fending for yourself. It means rights to practical assistance and support to participate in society and live an ordinary life’.”
Inclusion Scotland rightly points out that it is important that the definition came from disabled people. In other words, it sets out how such individuals aspire to have their human rights recognised and put into practice.
At the end of the day, although we have 52 recommendations, some of which I have quoted, that sense of ensuring the rights of people with learning disabilities is probably the most important element of the document. I very much welcome the publication, which is evidence that the Scottish Government is doing what it can to support those in Scotland with a learning disability.
16:20
I apologise for my absence towards the end of the opening speeches. I was called away unexpectedly, but I am glad to be back and to participate in this important debate.
When the debate is led by the Minister for Public Health and key speakers are people who have a long-standing engagement in health, the matter is in danger of being viewed as a health issue. It is, of course, nothing of the sort. It is a quality-of-life issue. Health is an issue within that, as are access to culture and recreation, and the emotional life of those who are disadvantaged. Dennis Robertson in particular focused on the issue of generating respect for people whom we may regard as different to ourselves. However, people with learning difficulties see themselves as normal and us as deviating from their normality. We should never forget that that is the case. To the people who are the subject of the debate, we are the oddballs, not them.
Nearly 50 years ago—in 1964—I spent the time between school and university working in a locked ward in Stratheden hospital in Fife. I was 17. We had 32 beds there. As members of staff, we worked a 108-hour fortnight. We used to work double shifts Saturday and Sunday and then get the other weekend off.
We were chronically understaffed. We should have had six members of staff but there was one weekend when there were two of us. From time to time, I was in charge of the ward. I was 17 years old and had had not a single day of formal training.
What kind of people did we used to have in ward M2 in Stratheden hospital? We had a couple of people who were former Carstairs patients. We had people suffering catatonia. We had people suffering the general paralysis of the insane from alcohol or tertiary syphilis. We had severely paranoid people. We had a gentleman from Poland who had spent time in a gulag in the Soviet Union and his mental ill health came from that.
In that environment, we also had people who are the subject of the debate. It was an environment as far removed from what would be suitable to meet their needs as it is possible to imagine.
I will speak about one of them in particular. I will call him Willie—that was his name, but I am sure he is no longer with us so I can speak about him. He was quite competent. He could go to the shop and buy things for us. He could interact with visitors in the hospital grounds. However, 50 years ago, Willie and the likes of him and his friends throughout Scotland were in locked wards in psychiatric hospitals.
Things have got better. Let us not kid ourselves about that.
Does the member accept that there is a vast difference between mental ill health and learning disabilities? We must be careful that we do not stray into mental health issues rather than focusing on learning disabilities.
The member makes my point for me. In the past, we treated something that is very far from a mental ill health problem as if it was one, and I hope that we never return to those days.
In the seven months in which I worked in that 32-bed ward, we had a single visitor. People were entirely isolated from the world.
How many people with learning disabilities do we have? We have heard various numbers. We have heard that it is one in 100 and that it might be one in 40.
What kind of things are accessible to almost everyone in our society, including people with learning disabilities? That is the interesting question.
When I was a minister, I filled in for one of my colleagues at a GIRFEC event in Aberdeen. Before I went on to do my little bit, we saw a film of a one-hour-old infant responding to music—waving its hand in time with the beat of music. Others might have seen this miracle, but I am not a dad, so I have not, and I was fascinated by it. It reminded me that, when I have been with people with learning disability, I have seen that music is one of the things to which they can respond and contribute in a decisive and important way. We must not forget the importance of access to culture and the opportunities to contribute to culture.
On the related issue of autism, we have the autism strategy, which was launched nearly two years ago. It is interesting, because it has something that I do not clearly see in what is before us today. Yes, the new learning disabilities strategy has around 52 recommendations, but it does not have the sort of single, cohesive, integrated aim that the autism strategy has.
I propose that our aim should be to deliver to people with learning disabilities the best available quality of life that is attainable with their individual needs and opportunities, to do so in a way that does not require support, where possible, and to provide support when it is required. Rather than having everybody who is engaged in this issue having to remember 52 recommendations, let us get to a position in which everybody has a single thing on their mind that they can carry forward.
Today’s debate is part of a continuity of effort that has gone on from the very resumption of this Parliament in 1999. Our predecessors in office did a lot, and we build on that. That is as it should be.
My wife frequently goes to the Boyndie centre in my constituency for afternoon coffee. It is an excellent venue and provides employment and opportunities to socialise for many people with learning difficulties. I am sure that all members have similar good examples in their constituencies.
This has been an excellent debate. I congratulate the minister on giving us this opportunity to discuss these issues.
16:27
I, too, welcome the publication of the Scottish Government’s latest strategy for improving the quality of life of those with learning disabilities. I also welcome the opportunity to debate the strategy this afternoon.
All of us know friends or family who have been affected to some degree by the issue that we are discussing. We have had some good speeches this afternoon, and I think there has been a constructive debate.
The way in which people were treated in the past and the way they are treated now are leagues apart. It would be churlish of any of us to suggest that there has been no improvement in the quality of life of those in our society with learning disabilities. There has been significant progress since “The same as you?” was published in 2000, and there have undoubtedly been a number of successes.
That document represented the first attempt in decades to take a strategic and overarching look at service provision for those with learning disabilities. In the past decade, many people with learning disabilities have been able to set up their own homes and live independently in the community. They have also been empowered and afforded a level of visibility that was hitherto unavailable to them. The closure of the remaining long-stay hospitals for people with mental disabilities in Scotland was another welcome step.
One of the big success stories that came out of the recommendations in “The same as you?” was the creation of the SCLD, which brought together partner organisations to co-ordinate the improved delivery of services for those with learning disabilities. A few weeks ago, the chief executive of the SCLD, Chris Creegan, said:
“you can't change decades of institutionalisation and prejudice and relative invisibility in just a few years. There is still a lot of work to do.”
I am pleased to see that the minister acknowledges that in the motion.
As is often the case when we consider issues relating to the wellbeing of individuals, inequalities stand out as the biggest barrier to greater outcomes for those with learning disabilities. Along with Enable Scotland and the Learning Disability Alliance Scotland, I welcome the Government’s focus on tackling inequalities. It is staggering to be reminded that those with learning disabilities will, on average, live 20 years less than the general population. Many will even live shorter lives than some smokers in the more deprived areas of the country. Only when we begin to tackle the root causes of that appalling anomaly can we be truly satisfied that the quality of life of those with learning disabilities is on a par with the rest of us. I am pleased that the new strategy aims to identify the reasons behind the gulf in respective life expectancies and to ensure that the relevant agencies and authorities know where their responsibilities lie. Perhaps the Public Bodies (Joint Working) (Scotland) Bill will keep that in focus.
Another component of inequalities that the Scottish Government must seek to address concerns the employment of people with learning disabilities. The eSAY statistics for 2012 highlight that three quarters of those known to have a learning difficulty are not currently in employment or training, with only one fifth of those who are employed working more than 16 hours a week.
With meaningful paid employment comes a sense of value and inclusion. More importantly, it strengthens the individual’s ability to live independently. That is why supported employment opportunities are so crucial to the wellbeing of those with learning disabilities. That is why the inclusion of recommendation 41, which seeks to develop
“a range of supported employment opportunities”
in the third sector, local authorities and national health service boards will be beneficial, as is suggesting that such bodies lead the way by employing more people with learning disabilities.
The Conservative amendment—which, along with the motion, we will support—makes the pertinent point about ensuring a smooth transition from child to adult services. The 39th recommendation in the strategy—do not worry; I am not going to go through them all—is incredibly important in that respect. However, it is also vital that the Scottish Government monitors the performance of councils, Skills Development Scotland and other agencies to evaluate their success in providing clearer and smoother post-16 transition pathways. When the minister sums up, I would be keen to hear how that will be monitored to ensure adherence by the relevant parties.
Just over 26,000 people are known—I stress known—to local authorities as having learning difficulties. That is a not insignificant number of people. The strategy is not perfect but has, in part, been shaped by stakeholders and it provides a blueprint from which further progress can be made. It is now up to the Scottish Government—and all of us—to ensure that those tasked with making progress do so.
16:33
Like other members, I welcome the new learning disabilities strategy. However, in line with what Dennis Robertson, George Adam and Learning Disability Alliance Scotland have said, I would say that the language of the recommendations in “The keys to life” is somewhat complex. I found the easy-to-read version very helpful. I do not know why such a report could not be couched in simple language for everyone. I say that with feeling after another committee evidence-taking session on the Public Bodies (Joint Working) (Scotland) Bill—a title that I find quite difficult to reconcile with its integration of adult health and social care intention.
The strategy is an important document, and this has been an important and interesting debate. It is fair to say that we have come a long way since the publication of “The same as you?” 13 years ago, but we must not become complacent and we should recognise that there is always more to be done. That said, there is no doubt that the appropriate care of people with learning difficulties is taken much more seriously now than it once was. It is heartening to learn that more than 1,000 adults with learning disabilities have moved out of special hospitals and into homes within the community.
I can well remember the very real concerns of parents in Aberdeen when plans were being made to move their children, some of them severely disabled and approaching adulthood, from long-stay hospital into the community. By and large, they settled in well. It is now taken for granted that such people will live in supported homes in the community. I recall the happiness of a 70-year-old lady as she showed me her sheltered flat—her first real home after a lifetime in institutional care.
If further progress is to be made, people with learning difficulties must be given a say about the services that they receive and greater control over their lives. That is why I was happy to support the Social Care (Self-directed Support) (Scotland) Act 2013. That act will enable more people to lead a normal life of their choosing in their community, despite their disability. It will extend freedom, enable choice and empower individuals to direct the terms of their care.
Recommendation 5 in “The keys to life” recognises that fact and wisely suggests that local authorities and their NHS partners work creatively to ensure that people with learning disabilities have access to a wide range of providers. I agree with Malcolm Chisholm about the need to involve the third sector in the provision of care.
The report has important things to say about independent living, human rights and the delivery of public services. It rightly recognises the health inequalities and difficulties that many people with learning disabilities face, and it signposts the way to overcoming such issues. I recognise the significance of joined-up thinking for people with learning disabilities, particularly in the context of health, and I would like more to be done to ensure that such people receive effective healthcare on equal terms. I welcome the minister’s initiatives in that regard and particularly his decision to look at the GP contract, because primary care is key to supporting the health of people with learning disabilities.
The report is heavy on recommendations and awash with potential reviews to improve healthcare for people with learning disabilities, but it says little about a life plan for such people as they move from childhood into the adult world. There is little on employment, although there is a great need to move people into meaningful paid work when it is appropriate to do so.
According to Capability Scotland, the gap between the unemployment rates among disabled and non-disabled people has grown during the past nine years, and recent statistics show that last year 653 fewer adults with learning disabilities in Scotland were known to be working than in the previous year. That is a big problem, which deserves to be treated as such.
Peter Scott, chairman of the Scottish Consortium for Learning Disability, said:
“The trend ... towards more independent living is welcome, but there’s also an underlying concern that whether in relation to education, employment or day services, opportunities for people may be diminishing.”
He is absolutely right. According to “The keys to life”, only a quarter of people with learning disabilities were in employment or training for employment when the issue was last surveyed, and only a fifth of those people worked for more than 16 hours a week.
Of course, there are success stories. The Bread Maker is a pioneering social firm in Aberdeen, which provides a range of meaningful employment, training and education opportunities for up to 20 adults with learning disabilities. However, such businesses are few and far between, and it is clear that a lot more could be done to help people with learning difficulties to enter the world of work.
The Doran review and the curriculum for excellence said that every child has the right to become
“a successful learner, a confident individual, a responsible citizen and an effective contributor”,
wherever their learning takes place. That has been shown to hold when a child or young person is in primary or secondary education, but we have made less progress in the period after school. We must do better, as the Conservative amendment suggests. We owe nothing less to the nearly 16,000 pupils with learning disabilities who are currently in Scottish schools.
For that reason, we must boost the number of such people who take up a modern apprenticeship. Only 0.3 per cent of placements are filled by someone with a learning disability, which is shocking. If we are serious about improving quality of life, we must do more to ensure that people with learning disabilities acquire the right skills to enable them to grasp the right opportunities.
I welcome the report. Its recommendations point towards a more cohesive environment of support and care. However, words go only so far. If we are really to improve the quality of life for people with learning disabilities, we must focus hard on implementation.
I congratulate the people who were involved in producing “The keys to life”, and I hope that in time the challenges that have been outlined in today’s debate will be fully addressed. I am happy to support the motion and the amendment in Mary Scanlon’s name.
16:39
Like others, I welcome the opportunity to debate the new learning disabilities strategy. I am not sure whether I require to declare this as an interest, but I am very proud to be the convener of the cross-party group on learning disability. I join my colleagues Jim Eadie and Joan McAlpine in taking an active interest in the group.
I welcome the minister’s acknowledgement that much was achieved with the previous strategy, “The same as you?”, such as the closure of long-stay institutions such as Lennox castle, which meant that more than 1,000 people moved into homes in the community. That strategy led to many more people with learning disabilities having the opportunity to go to college and to access and sustain employment than was ever the case in the past.
For me, one of the most important things about “The same as you?” was the approach. I remember the early draft, which Iain Gray tore up. He tore it up because we failed to engage directly with those with learning disabilities and their families. The strategy went back to the drawing board, and there was then complete involvement and engagement of people with learning disabilities in shaping the policy and the services—in short, in shaping the kind of future that they wanted to see. The slogan “nothing about us without us” should underpin everything that we do in this Parliament.
Therefore, while welcoming the new strategy, I gently register my disappointment that it was not developed in such extensive consultation with people with learning disabilities and their families. There was no public engagement that we were aware of—certainly not in my community and certainly not with the cross-party group. I think that we would all agree that solutions that are bottom-up are always better than solutions that are top-down. I urge the minister to look at ways to ensure that people with learning disabilities and their families are involved in overseeing the implementation of the strategy and to make co-production a reality for them all.
I will deal with process at this point. I remember—albeit vaguely—how Government works from my time as a minister. Let me share some important lessons that I learned. Much has been made of the fact that the strategy contains 52 recommendations—some more substantial than others—but where are the action plans, the measurable targets and the milestones? We need those if we are to be able to measure progress and success.
It is the Government’s responsibility to ensure that aspirations are turned into action. How will the minister monitor implementation and secure agreement from partners such as colleges and local authorities? Are there even measures for people with learning disabilities in some of our local authority single outcome agreements?
If we are to make a difference to the lives of people with learning disabilities, we must focus on what matters. I urge the minister to ensure that this is not another strategy that is left on the shelf to gather dust. Please, please put in a monitoring framework and give it teeth. He will have our complete support if he does that. There is no doubt that, if implemented, many of these recommendations can make a difference. That is why it is so important that the Government monitors them.
Like many others such as Bob Doris, Stewart Maxwell and Malcolm Chisholm—there are too many to name them all—I support the comprehensive recommendations tackling the appalling health inequalities for people with learning disability. I support, too, the approach that puts equality and human rights at the heart of everything that we do, because this is a fundamental matter of rights.
It is important to recognise the challenges, of which there are a number. Let me touch briefly on four. The first is welfare cuts. This might be uncomfortable for members of parties in the United Kingdom coalition, but I am clear that the sweeping changes being made to our welfare system are having an absolutely disproportionate impact on disabled people. Whether in relation to the bedroom tax or changes to disability living allowance, there is real fear about what lies ahead. Many are already accumulating rent arrears because of the bedroom tax. With the removal of the lower rate of the daily living element of disability living allowance, many will lose some of their income. We need to address those fears because they are becoming people’s realities.
The second area that I want to touch on is college cuts. Joan McAlpine was absolutely right to praise the work of the transitions to employment project that Enable and the Scottish Consortium for Learning Disability are taking forward. I do not think that anybody would disagree with that, but, as I have said, it does not plug the cuts to college funding. By all means, let us join together to improve quality, but let us not cut resources at the same time—and there have been cuts.
I am saying that not to score points, but because I believe that it undermines the strategy that the minister is trying to implement. Enable undertook a survey of colleges in 2012, and it tells us that college courses have been cut by more than 46 per cent in the past two years. The number of teaching staff for people with additional support needs has been cut by 16 per cent in the past two years, and there has been a 20 per cent cut in the number of adults with learning disabilities who are attending college. None of that should make us happy.
The third challenge is employment. An increasing number of adults with learning disabilities are failing to secure employment. Indeed, the number fell by 16 per cent in 2012 and the trend seems to be downward. That is in the context that the number of those people in employment in the first place is relatively small.
The fourth challenge is social care. Members will be bored of hearing me talk about this. Throughout Scotland, there are still different charges and the postcode lottery of care still exists. Not only are there different charges; there are different eligibility criteria and 32 different ways of doing things. Although I believe absolutely in the ability of local authorities to do the best for their local communities, Scotland is frankly not big enough to have such wild variations, which I will touch on in a minute.
More than two years ago, the Scottish Government and COSLA set up a working group to deal with the problem, yet disparities remain. I once jokingly said that if they were on performance-related pay we would be withholding their payment—I am not joking any more. Neil Bibby pointed out the truly shocking statistic that people living in 25 out of our 32 local authorities are being charged for their care at a rate that is higher than the top rate of income tax for the wealthiest in this country.
I will give members some examples of the disparities. One council charges £111 for a single day at a day centre while another charges just £6. One council charges £8.28 as the hourly rate for home care while another charges £23.70. Scotland is not such a big country that that variation can be allowed to continue.
Ken Macintosh was, in part, right. It was in fact David Cameron who said that the burden of austerity would fall on those with the broadest shoulders. He clearly then just ignored his own words, because the burden has not fallen on the bankers or the millionaires in his Cabinet—they get off scot free. The burden has truly fallen on the poorest in society. I support the Government’s motion and the strategy, but we need robust implementation and monitoring arrangements if we are truly to make a real difference.
I call the minister to wind up the debate. Minister, I would appreciate it if you could keep going until 5 o’clock.
16:48
I thank all members for their speeches in what has been a useful debate. The Parliament has debated issues around learning disability fairly regularly, but this has been our first opportunity to debate the new strategy, which is the first of its type in more than 10 years. I recognise that there is always a hefty degree of scepticism about whether strategies make a real difference to people’s lives. Having a healthy degree of scepticism about the benefit of strategies is a good thing. I have a healthy degree of scepticism about strategies. However, in saying that, I assure members that when I bring forward a strategy, I am determined to do everything in my power to ensure that it does what Neil Bibby believes it has to do, which is make a difference to people’s lives.
As Jim Eadie said, no party has a monopoly on the issues around learning disability. A number of members have referred to the continual decline in the number of long-stay beds for those with learning disabilities. That did not start with the strategy in “The same as you?”; it started back in the early 1990s under a Conservative Government, when we started to close institutions such as the Royal Scottish National hospital, in which my clients were often based.
The process has built up over a 20 to 30-year period. If I have a criticism of what happened then, it is that there was a lack of a community strategy to provide the right kind of support. “The same as you?” came along and helped to provide the cohesive strategy that was necessary to build on the progress that had been made with the closure of long-stay hospitals.
The key aspect of the new strategy is that, rather than claiming to be better than the previous one, it builds on the progress that has been made. Neil Bibby expressed a degree of scepticism about whether “The keys to life” was as ambitious as “The same as you?”, but it would be fair to say that “The same as you?” was taken forward by this Government for a significant period, so there is no lack of determination on our part to do everything that we can to ensure that the new strategy can make a real difference to people’s lives.
I understand that that is not something that can be achieved by Government on its own, just as the new strategy was not drafted by the Government on its own—there was input to its content from a range of stakeholders. We took on board what they thought a new strategy should look like, and we developed it in partnership with COSLA, in recognition of the fact that local authorities have a lead role in delivering a range of services to support people with a learning disability and their carers.
Will the minister take an intervention?
I will give way once I have finished my point.
It is important to recognise that the Government will not achieve everything that is set out in the strategy by itself. The strategy will have to be delivered in partnership with a range of stakeholders: the NHS, local authorities and, importantly, the third sector, the role of which Malcolm Chisholm highlighted. I believe that the third sector has an extremely important role in delivering a range of recommendations that are contained in the strategy. That partnership helped to frame the strategy, as was the case with previous strategies, and it will be key to ensuring that, in 10 years’ time, we will be able, in reviewing the strategy, to recognise that it has built on the progress that was made through “The same as you?” and has made a real difference to people’s lives. We need to ensure that we take forward the strategy in a way that does that.
The minister says that we are working in partnership with various stakeholders, such as local government, COSLA, the NHS and the third sector. Would he acknowledge that the most important stakeholder in taking forward the strategy is the individual with a learning disability?
I completely agree with that. When we talk about some aspects of health or social care policy, there is a danger that the discussion becomes too process driven, to the extent that the patient or the individual comes second to the process itself. The key is that the strategy does the kind of thing that Dennis Robertson mentioned in his speech. He said that it needs to ensure that we treat those who have a learning disability with dignity, equality and—importantly—respect. The strategy can help us to achieve that.
I want to pick up on a few of the themes that have emerged during the debate. There has been a bit of ping-pong on the issue of education and access to college courses. Joan McAlpine, Jim Eadie, Neil Bibby, Jackie Baillie and Stewart Maxwell all mentioned the approach that the Government is taking. It is extremely important that those with a learning disability who access education services, whether in school or in college, do so for a purpose. Particularly in the case of college, it is important that people are not parked on courses just for the sake of doing a course. The course that someone takes should lead to a positive outcome for that individual.
That is extremely important, because I know that in the past there has been a tendency for individuals with a learning disability to be parked on a college course so that it appears that they are doing something worth while, but the outcome is that it changes nothing in their life. Therefore, one of our approaches is to ensure that colleges and the rest of the sector work more effectively to identify the right types of opportunity for those with a learning disability—ones that provide a more positive outcome and destination for them so that they do not go from one college course to another because that appears to be what they are interested in doing.
One of the ways in which we can ensure that we build on that approach is to increase employment opportunities for those with a learning disability. I acknowledge that addressing that issue is a very significant challenge; Jackie Baillie referred to the statistics in her speech. However, we are providing funding to the Scottish Consortium for Learning Disability for project search, which is a one-year programme of supported work experience for individuals that guarantees them an interview at the end of the programme with a view to going on to employment. Six pilots are operating across the country to evaluate how effectively the model can be delivered in partnership with the third sector. It will be key to learn from that partnership and ensure that we can scale it up on a more consistent basis.
If I recall correctly, it was Rhoda Grant who suggested in her speech that, when creating employment opportunities for those with a learning disability, Government and public agencies should lead by example. The strategy sets that out in recommendation 14. Our education bodies, local authorities, health boards and Government can all play a part in creating opportunities for individuals to get into employment. In doing that, we can ensure that we get a better link between education and getting into employment.
We substantially agree on the need to improve quality and have positive outcomes that lead people into employment. However, given the cuts, will the minister make a commitment today that we will provide for the same number of learning-disabled people—or, indeed, more—to experience the new quality service?
The danger here is that we lose focus on improving the outcomes for those with a learning disability when they go into education provision and then look to move on to employment. That aspect has been lacking in the past and that is what the strategy sets out to address.
The other key theme that was highlighted by a number of those speaking in the debate is health inequalities. As a country, we face stark health inequalities in our society. However, the fact that they are exacerbated for those who have a learning disability is simply unacceptable. I said in my opening speech that we have identified the marked health inequality of the life expectancy of people with a learning disability being 20 years less than that of the general population, which is just not tolerable in a modern society. However, having identified that inequality, we must now ensure that we understand what its drivers are and what will work to address it. We are providing funding to the Scottish learning disabilities observatory to undertake detailed work to ensure that we understand those matters better and that we measure the approach that we take in order to assess whether it is closing the gap.
We do not want to get into a process of “projectitis”, in which a project that is meant to deliver a reduction in inequalities does not in the end deliver what it was intended to. The observatory’s work will be crucial in ensuring that we deliver. We are also taking forward a HEAT target to ensure that all our health boards are under an obligation to collect the required information.
Another key approach to closing down the gap for those with a learning disability is to ensure that our primary care is set up to provide the right type of support to those with a learning disability. Joan McAlpine said in her speech that we need to look at that aspect within the new GP contract. We have given a commitment to do that and assess how we can build on that to ensure that primary care provides the right type of support.
A number of members referred to the importance of self-directed support and the real difference that it can make to an individual’s life by giving them the opportunity to control how their care is provided. I recognise the challenges for local authorities in that, particularly the challenge of the locus of control shifting from the professional to the individual. However, I believe that that is an important step in the direction that we must move in.
How we treat the most vulnerable members of our community, which includes those with a learning disability, is a reflection of our society and its values. Significant progress has been made over the past couple of decades in ensuring that those with a learning disability in our society are treated with fairness, respect and equality. However, we clearly have to do much more. I believe that we have a strategy that will allow us to achieve that in the coming years.