Scottish Strategy for Autism
We continue with item 3 on the agenda, which is consideration of the Scottish strategy for autism. I welcome our second panel. Michael Matheson, the Minister for Public Health, is accompanied by—from the Scottish Government—Jean Maclellan, deputy director, adult care and support division, and Annette Pyle, policy manager, care and support, adult care and support division. Welcome to you all.
I invite the minister to make an opening statement before we proceed to questions.
Thank you for giving me the opportunity to attend today’s meeting.
The autism strategy was launched just over a year and a half ago. It aims to ensure that people with autism and their families are supported by the widest possible range of services, including social care, education, housing and employment. We are beginning to make a real difference to the lives of people with autism by improving the support services that are available to those who need them. We are making good progress, but we are in the early stages of the development of the strategy’s work and there is still much more to be done.
Alongside the strategy, I announced an investment of £13.4 million of funding over four years to build on improvements to autism services and access to them. As part of that funding, an autism development fund was made available to local and national organisations to deliver local services on the ground. In the first round of the fund, 23 organisations across Scotland received funding. Because local and national organisations showed a high level of interest in submitting bids for the fund, I decided to increase the level of funding to £1.5 million, as the original £1 million did not meet the demand from the large number of organisations that submitted bids. The second round of funding has enabled a further 30 organisations to deliver local projects throughout Scotland, which are tackling local needs for people with autism.
Funding is also being delivered for the roll-out of six new one-stop shops in addition to the two that already exist in Glasgow and Edinburgh. The Fife, Lanarkshire and Highland one-stop shops have opened, and the two additional one-stop shops that are planned in Grampian and Ayrshire will open soon. The one-stop shop in Perth is being launched today. The one-stop shops are voluntary sector models that work in partnership with local authorities, the NHS and local groups that represent parents and people with autistic spectrum disorder. Each one will be tailored to meet the needs of individuals. I have been out to see those services and I can see the real difference that they are beginning to make for individuals.
Given the Scottish Government’s joint partnership with the Convention of Scottish Local Authorities in delivering the strategy, we provided £1.12 million to local authorities to allow them to develop local autism strategies and the associated action plans.
We also made funding available to the Open University and the University of Strathclyde to enable professionals who are working in all areas of autism services and carers of people who are on the spectrum to study by distance learning and other methods delivery-specific autism courses. That initiative will enable approximately 1,000 people to study understanding of autism courses free of charge over a three-year period. That will help to ensure that people who are on the spectrum will have access to professionals in autism services who understand the specific needs of people who are on the spectrum.
Other projects that have been funded include the Scottish Autism project to analyse and apply narrow autism phenotype research, which investigates which early interventions work for people who have autism and their cost effectiveness in a Scottish context; a waiting list project to develop adult diagnostic service solutions and to drive down waiting times; and the revision of the autism toolbox, which is a practical classroom resource to help to ensure the successful inclusion of children who have autism and is available in schools across Scotland. The new toolbox will be web based and much more accessible.
Those initiatives will make an impact in delivering on the strategy’s recommendations. They will help local authorities to develop strategies and action plans, and help organisations to deliver services locally when people need them, to improve waiting times, to improve interventions, and to share best practice. All that work will help us to realise our vision as part of the strategy.
Since the strategy’s launch, much work has been done to improve services for people who have autism, their families and their carers. However, it is a 10-year strategy and more needs to be done. It is important that the work on autism continues to grow and develop in order to deliver improved access and services, and to enrich the lives of people who have autism and their families.
Thank you, minister.
When I read the briefing notes for this morning’s evidence session, I noticed that we are coming to the end of an initial mapping exercise across Scotland’s 32 local authorities to quantify accurately for the first time all the services and support for those who are involved in supporting people and families who are living with autism. That exercise is due to be completed by June 2013.
I also note that the one-stop shops in Glasgow and Edinburgh are up and running and, I hope, improving services for people who have autism in Glasgow, the area that I represent, and in the city of Edinburgh. Can we assume that the mapping exercise is complete in Glasgow and Edinburgh? How close are we to completing that exercise across the country? How will we use the results to direct funding to fill the gaps in provision?
An important part of developing the strategy was ensuring that the resource that we were providing was targeted at the areas that would have the biggest impact, and addressing areas in which there were gaps in services. That is why some of the funding for the strategy was targeted at mapping what was available in local authority and health board areas. We provided resource to a number of the national autism organisations so that they could engage mappers who were responsible for looking at local authority and health board provision and engaging with parents and those who have autism on their views of the services that were available and where the gaps were.
That work is more or less complete, and I am waiting for the report; I have been advised that it will be submitted to us by the end of the month. Once we have that report, we will be able to decide on our response and on how we can manage the work that will be necessary to address the issues that the mapping exercise has highlighted.
The mapping work will be shared with local authorities, health boards and other stakeholders in local areas to support them in their work on their local strategies and action plans. That will provide them with a wealth of information around not only what the professionals think is available in the area, but what patients, carers and those with autism have identified as the issues that need to be addressed. That will give us a much more comprehensive picture of what the provision is, what the gaps are and how any such gaps can be addressed. We have set aside part of the autism funding to enable us to address some of the issues that come from the mapping exercise.
11:30
You are right to note that the one-stop shops in Glasgow and Edinburgh are up and running. There will be six additional one-stop shops, three of which are also up and running. The one-stop shop in Perth opens today, and the other two will open shortly. Those facilities enable professionals, parents and carers for people with autism to access information about the services that are available and about training that can be provided to parents and carers, along with support for professionals.
I have referred some of my constituents to the one-stop shop in Dunfermline, which also conducts home visits and assessment work in individuals’ homes. The one-stop shops help people, post-diagnosis, to get the support they might need to make choices about services. They provide parents and carers with information on what they should be doing and the support that is available regarding any issues that they might highlight.
That gets the process quite clear in my head. The mapping exercise that is almost complete will identify the level of service that is available across the country and say where services could be improved or where there are gaps. That will feed directly into local strategies. Using the funding that is available, excluding the £1.8 million a year that is set aside, £8.9 million is left over in the four-year strategy. Will that £8.9 million feed directly into the results of that mapping exercise, to identify where the gaps are?
Not all the funding is being held back for the mapping exercise; we have funded certain areas as part of the strategy already.
I can give you a breakdown of the £13.4 million that we set aside. In 2011-12, there was a total spend of £2.5 million; in 2012-13, there was a spend of £3.6 million; and, between 2013 and 2015, we have committed £4.97 million to a range of initiatives that are being taken forward now and will be taken forward over the next two years. That means that £2.2 million from the fund is available between now and 2015. A large part of that will go towards the work that is going on with the mapping exercise and will help to address some of the issues that it has identified.
That provides us with important clarity. Money has not been put on hold awaiting the result of the mapping exercise. Initially, I thought that £1.5 million had been set aside each year, with everything else being held over until the mapping exercise was complete. However, more than that has been spent on an annual basis. It is helpful to know that.
On some of the aspirations of the autism strategy, we have been looking for an improvement in the removal of short-term barriers, such as delayed diagnosis and delayed intervention. We think that a plan should be put in place for the person with autism once the diagnosis has been made. Significant sums of money have been spent already—have some of those barriers been removed, or has progress been made on speeding up the process?
There are two aspects to that. Over the past year and a half, we have used some of the funding to identify the barriers to early diagnosis and the support that is needed after diagnosis.
We have funded the autism achieve alliance, which involves NHS Lothian, in partnership with the University of Edinburgh and Queen Margaret University. They have undertaken research to identify the barriers to diagnosis and what can be done to reduce the waiting times for individuals. The alliance has developed and is taking forward an action plan, and it is examining the issue across Scotland—in particular, it is looking at issues around process. People might be referred to one person and then referred to another person and so on before a diagnosis is eventually arrived at.
Another major inhibitor that has been identified is the number of staff who are qualified and able to make a diagnosis. This year, we are providing about £300,000 to NHS Greater Glasgow and Clyde to increase capacity among staff who can make a diagnosis. That will allow for quicker diagnosis and reduce the waiting times for individuals to receive that service.
It is partly about process and partly about capacity. Some of the funding that we provide is to address those issues. That will help to increase the speed at which an individual receives a diagnosis and, as a result, will reduce waiting times.
I note the two aspects. There is an unclear referral process, when an individual is referred between different clinicians or groups for diagnosis. The issue is one of having qualified staff who can reliably make an evidence-based diagnosis.
Are there any national targets? For example, a parent might go to their general practitioner and say that they are worried about their child and that they would like to have them tested with regard to their being on the autism spectrum. What are the expectations around that patient journey? Whether or not that relates to Glasgow, which I represent, are there national targets around that?
I understand that the national strategy is trying to fix process issues. I appreciate that there are issues around having a sufficient number of qualified staff, which the national strategy is also trying to fix. What are the expectations regarding the patient journey?
When the autism strategy was being developed, the key area that was identified around diagnosis was the delay that adults can experience in receiving a diagnosis. That was much more problematic for adults than it was for children, for whom the process was quicker and appeared to be clearer.
The work that we have been undertaking through the strategy, and the work that the autism achieve alliance has been pursuing, has focused on how to improve the system and speed up the process, especially around adult diagnosis. There is no target as such—it is not that someone who has been referred should be diagnosed within a particular timeframe—but there is an expectation that the pathway will be significantly improved as a result of process improvements and increased capacity among qualified staff.
We are in the early stages of a 10-year strategy, so we can consider the issue as we go forward. At this stage, the priority has been addressing issues around the process to make it clearer, simpler and, where necessary, more comprehensive, while ensuring that we have the right staff in the right place with the necessary skills to make a diagnosis at an early stage. Most of the research has indicated that the real area of difficulty has been for those adults who have remained undiagnosed, considering the delay that they can experience.
There is always a debate in our committee about whether there are enough targets or too many targets. If everything has a target, do targets become meaningless? However, I will not explore further the question whether there should be a target; I am more interested to know how you, as Minister for Public Health, seek to monitor the patient experience of adults with autism to see whether the care and treatment pathway is being improved. How can that be done as part of the 10-year strategy?
What should become evident is that the waiting times for individuals who are looking for a diagnosis should decrease significantly and we should have more specialist staff who are able to provide a diagnosis. Improvement in access and in timeframes should demonstrate that.
As you will appreciate, the autism strategy is not something that we have published and are not monitoring. We set up the reference group, which is made up of a range of stakeholders from Government and the third sector, and individuals with autism. The group is responsible for looking at our approach to the recommendations that are set out in the strategy and the action that is necessary to take forward each of them. The reference group is monitoring the work that is being done on reducing waiting times and improving the availability of diagnostic staff and services. It reports to Government on the progress that is being made in those areas.
The reference group has created six sub-groups to focus on particular recommendations in the strategy, although they may be associated with one another. The sub-groups contain a range of people from different sectors. Some of them are chaired by folk from the third sector who have a specialism in a particular area, or whose services have specialist experience in supporting the delivery of the strategy recommendations. I would expect the sub-group that is looking at an area to advise the reference group if further improvements or changes are needed. The reference group would refer that to ministers to consider whether there is any action that we need to take.
For clarification, was the investment for diagnostic capacity £185,000?
There was £45,000 for diagnostic training, which is stage 2 of the waiting list work that we are doing. There was the diagnostic support, which was £300,000—that was for NHS Greater Glasgow and Clyde. There was the work to consider what had to be done on the waiting lists issue, and £250,000 was spent on identifying the issues and what needed to be done to address them.
I was particularly interested in the NHS Greater Glasgow and Clyde figure, from a constituency point of view.
What is the current waiting time?
I do not have the exact timeframe for each health board or even at a national level, because the alliance that has been doing that work has developed an action plan. Jean Maclellan might be able to say what the average waiting times are.
Jean Maclellan (Scottish Government)
I could not give you an average waiting time. Phase 1 of that work has just been finished and we are moving into phase 2.
At the time of the previous autism strategy in 2002 to 2006, there were waiting lists throughout the country that were, on average, two to three years. Those were taken down to nothing and gradually built up again. My understanding is that the waiting lists are not of that scale this time round. However, when someone begins the journey from the point of referral, it can take quite a while for them to get to an outcome. That is a bigger issue than waiting to start, which is why the AAA is working to break down the bureaucracy.
I am trying to get a sense of how precious resources are being invested. We are talking about investing money to address diagnostics, but we need to know exactly how long people are waiting. Are people waiting too long? Has it drifted back up to the 2002 to 2006 level or is it short of that?
It is short of that. The AAA team has been round every health board and has clarified what their waiting times are. The team has had face-to-face meetings with every diagnostic team. We could give the committee that information separately from now—
I am just looking for a baseline so that we can measure progress. What is the ambition? Is it to get back to the improvement that was made in 2006?
11:45
We can ask the alliance, which has been leading on that work for us, for some of that detail and share it with the committee, if that would be helpful. That will give you a sense of its view of the current situation and an understanding of where we are trying to get to.
That is fine.
Do you agree with the suggestion that the diagnosis of children is improving?
Improvements have been made. When we consulted on the strategy’s development, the issues that were flagged up with regard to diagnosis related to adults who were waiting much longer and were finding it difficult to access diagnostic services.
That was my next question. There is still a high number of adults with undiagnosed ASD, but do we have any clue about what that number actually is? How many children in Scotland do we believe have the condition?
It is probably not a case of this or that number of people diagnosed with X; there will be prevalence levels that, if it will help, we can provide to the committee. As for the increasing levels of autism, people often say to me that there appear to be more people with autism than there were 10 or 20 years ago, but I have to say that a big part of that is down to improvements in diagnosis and recognition. The better our understanding of autism, the more we can improve diagnosis. Historically, a lot of people who had autism would not have been diagnosed as such because it was not properly recognised or understood. There have been advances in that respect, and the understanding now is that on average about one in 100 individuals might have autism.
I agree with you that years ago people had never heard of autism and did not know about ASD but my next question is about the continuing poor public and professional perception and knowledge of ASD. We are all trying to bring up our children; when you become a parent, you are dealing with a child each and every day. The public simply do not realise what it is like for a child with ASD and how things can go off; indeed, a few weeks ago, I saw a very informative play about an autistic child. What steps are we taking to inform the public? Has there been any campaign or publicity to ensure that the public know about the condition and to enable people to recognise that their child might need to be tested?
There is a spectrum with autism, and individuals can be at different points on that spectrum and function at entirely different levels. It is also a very individualised condition in the way it manifests and presents itself in different circumstances.
One of the most important issues is to ensure that families whose child might have autism have as much information and support as possible in order to support their son or daughter. We made funding available through the carers information strategy to support carers and some of that money was used to provide training for parents and carers of children with autism. The fact is that funding for such work is allocated from areas other than the autism strategy, and that particular funding was used to provide training to increase parents’ awareness of the trigger factors that might have an impact on their child’s behaviour.
Last year, I attended an event at the Pollok carers centre, at which one of the parents told me the story of her own experience. Whenever she went to a shopping centre with her son, she had real difficulties because of the environment, but no one had ever told her that there are strategies that can be used to address, minimise and manage those problems. The training provided her with an insight into those strategies, and she said that it made a difference almost overnight. Some of the work that is being done by the one-stop shops involves providing that type of advice to support parents in their role as carers.
We do not have a national programme to raise awareness. As I am sure you will appreciate, public information campaigns are expensive and we must make decisions about where we feel we can get the best impact from the resources that we have for the strategy. At this stage, we have not launched a public information programme, but part of the strategy will involve increasing awareness among professionals, parents and carers, and individuals with autism, and we will try to achieve that in a number of different ways. It may be something that we can consider in future, but at this stage we do not have a specific commitment to a public information programme as such.
People have come to me over the years with problems, and the issue has been raised more and more often. I know that we have the 10-year strategy, as well as all the health issues. The convener may draw me back when I ask my next question, but more people are coming to politicians and councillors saying that their child has autism and asking what steps are going to be taken at school. What steps is the minister’s department taking, along with the education authorities, to ensure progress for people who are coping with ASD? I admire every one of them, and there are children who are excellent but who require a wee bit of help at school. Does the strategy cover progress at school?
There are a couple of different aspects to that question. First, as I mentioned, we are working with local authorities to develop their local strategies and action plans, a number of which will include education, although in most local authority areas it is social work that leads on ASD. We have provided them with resources to develop local strategies and we expect all those strategies to be submitted by November this year, so that we can see what action is being taken at the local level. Part of that will involve better co-ordination between schools and other support services, whether that is social work or other departments, to assist in supporting individual pupils.
Secondly, we are providing capacity for teachers who have an autistic child in their class to get training on working with children with autism. Scottish Autism is due to launch a training programme this autumn, drawing on its experience with New Struan school and the resources that have been developed online—the toolkit to which I referred in my opening comments—to support teachers who work with children with autism in their class.
We want to ensure that local authorities have plans in place to co-ordinate the support that they provide at the local level, and alongside that we want to support teachers with the training that they require in working with pupils who may have ASD. I would not like anyone to think that the situation is ideal, but some of the foundation work that we are doing in that area will allow us to build on what exists and to develop the strategy over the next eight years.
An issue that is often raised with me in relation to many conditions, not least autism, is the transition between children’s services and adult life. Are measures in place to ensure a smooth transition in service provision for people with autism, particularly young people who are leaving full-time education?
For individuals with a range of conditions, transition tends to be an area in which difficulties can arise. As part of the strategy, we are working with the Scottish transitions forum, which I believe is based in Glasgow. We are looking at developing guidance for the better management of transition to support the transition of individuals with autism from one service to the next, whether in health or education. Given the nature of the condition, such changes can be quite unsettling and challenging. Part of the work behind the strategy is to improve transition, and that work is being progressed and developed. We are trying to improve the way that transition arrangements are made for individuals.
Will that look at the quality of life that people can expect, not just their medical or physiological situation?
We have to take a holistic approach, given the nature of autism. It is a condition that presents in a very individualised way, so the reality is that if arrangements are very prescribed, they will not work effectively. The work of the Scottish transitions forum will support that holistic approach and make sure that there is as much consistency as there can be, among 32 local authorities and 14 territorial health boards, on how they manage transition from one service to the next.
The other issue that was raised at the round-table discussion that we had in March was self-directed support. How will you incorporate the recommendations on considering the specific support needed for more able individuals with ASD and developing user and carer capacity to enable them to take part in the process of planning for the person with autism? Will people with autism be represented on the self-directed support strategy implementation group, for instance? Will they be actively involved in the SDS reference group?
SDS should be as accessible to people with autism as it is to anybody else. They should be able to make an informed choice about how they wish their social care provision to be managed—whether they want to take control of it, whether they want the local authority to control it, or whether they want a combination of both.
A specific event is taking place this month on SDS and autism, largely targeted at parents, carers and people with autism. It will feed into and support our work on regulations and guidance on SDS.
I see SDS as an opportunity for individuals with autism, as it is for any other person who might be subject to a social care assessment.
Thank you. That is helpful, because some people were afraid that, because of the nature of the condition, people with autism might fall off the radar.
The event that we will hold later this month will allow individuals with autism and their parents and carers to give their input directly to the work that is going on in support of the Social Care (Self-directed Support) (Scotland) Act 2013, which will come into force next year.
Thank you. I wanted to put that on record.
I have a very brief supplementary. I want to get some clarity on self-directed support—the minister will understand why when I ask my question.
Can you confirm that there is no compulsion on anyone with autism who seeks SDS to take personalised budgets or go through the personalisation process, and that local authorities can continue to provide support following any assessment? The personalisation process is only one element of SDS, but in some parts of the country it has been pushed as SDS.
I would like to get clarity because some families that have a family member with autism might be going through that process.
I am conscious that there are those who are extremely enthusiastic about SDS, because they want more control over how their care is provided, and there are those who do not want to manage their care, who may be less vocal and who may have some anxieties about what SDS might mean.
12:00
SDS is about choice. An individual can take as much control as they wish over their care arrangements, or they can leave it to the local authority to manage in the way that many local authorities do at present. Self-directed support does not change the assessment process itself; all it means is that at the end of the process, the individual is presented with four options and can choose to have as much control or as little control as they want. There is nothing mandatory about it—there is nothing that people are compelled to do—and nobody with a particular disability is excluded from it. It is purely a matter of choice for each individual as to what they feel best suits their individual circumstances.
That is helpful, thank you.
Transition has been mentioned. The further education sector supports a lot of young people with autism and special needs. Certainly in my area, in the west of Scotland, some members of that group have been attending college for five, 10 or 15 years. It is an important element of the transition from mainstream schooling.
Have you and ministerial colleagues had discussions about any unintended consequences from the change in direction with regard to employment outcomes, which that group of people will not fit into? Have there been any discussions between you and colleagues with responsibility for further education to ensure that there are no unintended outcomes, such as displacement of young people with special needs?
You raise two issues. One is the transition within education and the other is the move from the educational establishment, possibly into employment.
I completely understand the focus on young people going to college. The problem is the Government’s strong focus on young people moving into employment. As part of their management of that transition from mainstream education, many people from that group go into further education for two or three days a week. They sign up for different courses over the years—in some cases, over 20 years. That environment has supported them in one way or another outwith the home, offered inclusion to an extent and so on.
I am concerned that those people do not fit into the new focus of getting people into employment. I am not challenging that focus, but will it lead to an unintended consequence of squeezing that group of young people out of our colleges? If so, how will they be supported in the wider community? What is there to support them and provide an activity for two or three days a week, so that they are out of their home? It is no good for them just to be back in their home, and there will be an increased pressure on carers. That is my concern.
I understand where you are coming from as regards the changing nature of the student base within our colleges and as regards people with autism who may have been on courses for a long time. A key element is to improve the employability of individuals with autism. The “Count us in” report, which the National Autistic Society launched at the Parliament a few months ago, demonstrates well the desire to improve the opportunities for individuals with autism to be able to go into employment.
It may be that some individuals found themselves in colleges for extended periods because they had difficulty moving into the employment market. Employability is addressed in the strategy. The Government is reviewing and updating its national employability strategy, which—if I recall correctly—was launched back in 2006. The reference group has set up a sub-group that specifically feeds into the national employability strategy, so there is a specific element around recognising some of the issues around autism that are for employers to address, to help to support individuals with autism to increase their opportunities to gain employment.
Does that include the FE sector? Is it represented?
Yes. The approach gives those who are currently in the FE sector but who would do better to move into employment the opportunity to get the necessary support to do that. The sub-group that was set up is looking at that issue to see what we can do to improve the opportunities for individuals with autism to move into employment.
That would be terrific. However, colleges will now be measured on their success in getting people into employment and the concern—it may be misplaced concern—is that a college is not going to carry a group of people who are going to get it a lower place in the league table. I do not know whether the sub-groups that have been established will help to address that, but there is a significant population of young people with special needs in our colleges who have been there for some time, and I am concerned that there may be an unintended consequence for them. I am happy for you to get back to the committee to explain how the issue has been recognised and is being addressed. When we took evidence from the autism groups, they accepted that that was a concern.
There are issues. The first is about improving employment opportunities for individuals with autism and tackling some of the barriers. We have provided funding through the autism development fund for local programmes that help to improve the employability of individuals with autism. However, it is important that we show clear leadership at a national level, which is why we have already established a group that will focus on the current review of the national employability strategy. That group will ensure that helping to improve those opportunities is part of the national policy. I reassure you that the issue is on the agenda and is being addressed as part of the review that is taking place. That work is feeding into John Swinney’s department, which is leading the review of the employability strategy.
The second part of your question was about the opportunities for individuals with autism to undertake complete courses in our FE sector—is that correct?
That becomes the issue. We would all wish them a job, but if there is none—the employment market is difficult just now—and no place at a college, whose budget is going to be hit? That is the issue.
The “Count us in” report that the National Autistic Society published is being considered by the national employability strategy’s reference group, which is looking at what further measures need to be taken to improve employment opportunities for individuals with autism. The sub-group that has been set up to address that issue is feeding directly into the consideration of what has to be provided under the new employability strategy at a national level to tackle the issues that have been highlighted for individuals with autism.
A key aim is to improve the opportunities for individuals with autism to gain employment, whether through the FE sector or through direct employment, as there is an issue about individuals with autism not being able to secure the same employment opportunities as others, which we must address. Instead of having something completely stand-alone for autism—although we are doing some things through our funding of organisations to support those opportunities—part of the national employability strategy is about recognising some of the issues that individuals with autism face and considering what we can do to improve access to the employment market for that group of individuals.
With your indulgence, convener, I will ask a supplementary question. I meet a number of people who have autism, but autism is not their main barrier to learning. They have a variety of learning disabilities and autism is only part of the mix. I must be careful about what I say, as I would never say never about anyone finding themselves employment. However, a small minority of people have such profound and complex learning difficulties that paid employment may not be realistic for them. Some of those people use, for example, further education colleges as socially enriching places that enhance the quality of their lives.
I am not necessarily looking for an answer today, minister, but I ask that we ensure that, as part of the general mix, a range of avenues remain open to those who have complex learning needs, some of which relate to autism. One of those could be further education colleges. When it comes to people for whom, with the best will in the world, the outcome of employment might be unrealistic, I want us to ensure that other enriching things are available to them as human beings and that society allows them to take advantage of those things.
I hope that that is helpful, convener. That is the thrust of where I am coming from.
Bob Doris has articulated what I was going to say, so I am happy to go with his question.
You have two for the price of one, minister.
I appreciate where Bob Doris is coming from. I know individuals who dip into FE courses for particular purposes, such as for activities to do with daily living issues, and get benefits from such programmes. Jean Maclellan wants to say something about that.
I concur with the point that Mr Doris made. One of the sub-groups that the minister mentioned consists of people on the autistic spectrum and another is made up of carers. In a recent discussion about employability, people on the spectrum made that very point. For many such people, full employment is an aspiration that might be fulfilled. Some of the funding that has been provided has been for people who are self-employed—miEnterprise Lothian is a recent example. It is for people who have ideas that they want to turn into careers but who do not feel able, or do not want, to be part of a bigger organisation. Advocacy around enabling self-employment has been useful and helpful for others.
I think of a young woman who is particularly able in many aspects of her personality and functioning, who says that she does not want full employment because it would lead to mental health issues. She is happy with “meaningful occupation”—that is how she would describe fulfilment of an aspiration in her life. That takes the form of having an allotment, where she grows her own vegetables. She is a bit of a foodie who enjoys making food and sharing it with others. That gives her the kind of fulfilment that other people might get through full employment.
Drew Smith has a question.
I want to return to the issue that Richard Lyle raised, which was about public information about and understanding of the spectrum and the conditions on it.
It seems to me that there is a bit of an injustice, if we accept that we have not served people with autistic spectrum disorder conditions particularly well in the past. We have made a lot of progress in improving diagnosis and the services and support that are available, but I was struck by a comment that was made when we discussed the employability of those people, which was that the employment barriers that many people with autistic conditions face will be broken only when the understanding of the population as a whole improves. We were told that work could be done to improve the employability of those people and encourage them to do all the things that we would want them to do but that, realistically, unless there is a step change at population level in how people understand and appreciate autism that allows them to see beyond the condition, we will not achieve a major breakthrough as regards employability.
I appreciate that the minister said that a public campaign is not on the agenda at present. What would be the mechanics of such a process? Is it something that NHS Health Scotland should plan for? Would organisations in the sector and interested people think about what they might want to do and approach you? How would we get to the point at which it was possible to make that kind of change? I accept that that might not be for this year or next year, but we could have an aspiration for where we need to be once we have improved the services. Beyond that, how do we improve understanding?
12:15
I will pick up on the specific example of employability that you gave. The way in which to tackle the issue with employers is to have a targeted approach rather than a broad-based public information programme. That involves working with employers and employers organisations to help them to have a better understanding of autism, which can help to break down the barriers.
A broad-brush public information campaign might raise awareness of autism among employers without necessarily addressing their concerns or misconceptions about employing someone with autism. Therefore, part of the work around improving employment opportunities for individuals with autism involves organisations engaging directly with employers to break down their misconceptions.
We are providing funding in relation to a range of areas to do with employment. There is work with the National Autistic Society and we are supporting some councils with funding programmes in relation to employability. There is funding around training, too.
We have a range of public health and information programmes. In my experience, programmes often need to be targeted at the people to whom we want to get the message across. Broad information programmes that raise general awareness can be beneficial. A good example from the past 10 years or so is the see me campaign, which helped to address the stigma and break down some of the barriers associated with mental health issues. However, in the context of employability, any information programme should be targeted at the business sector and employers and address any misconceptions that they might have.
The big things that the see me campaign and other mental health awareness campaigns have been able to get across are that people can be affected by a range of conditions, which can change, and the prevalence of mental ill health. It seems to me that, in relation to autism, there is limited understanding on both counts. We talked about the perception that the incidence of autism is rising, although the issue is probably improved diagnosis. In general, we do not have a full understanding.
There is a danger in diagnosing and labelling a group of people with a condition and then treating them as other. I support everything that the minister is saying and doing about employability, but unless the issue is put in a broader context for people there will never be a breakthrough beyond the good employers who are interested in supporting people.
I am not saying that there should not be some form of public information programme in future. However, we must get the foundations of the strategy right so that we can build on it over the next eight and a half years. A public information programme might come at a later stage. Such programmes tend to be costly. If an individual came to my surgery because they were having difficulties getting into diagnostic services, it would be difficult for me to say that our funding priority was a public information programme.
The priority in the strategy is to get the basics right. Work will come out of that, and at a later stage we might consider whether a public information programme should play a part. The see me model might be useful and might lend itself to the field that we are discussing, although mental health issues are much more prevalent than autism. One of the national autism organisations might take forward a programme on behalf of Government. A variety of models could be used in taking the idea forward.
I am open to the idea, but I think that a public information programme would come a bit further down the line. We should ensure that we get the basics right and address the fundamental barriers that exist so that we can make improvements for individuals and families.
As there are no further questions, I thank the minister and his officials for their evidence.
12:19
Meeting continued in private until 13:19.