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Autism (Scotland) Bill: Stage 1
Alex Fergusson (None)
The next item of business is a debate on motion S3M-7676, in the name of Hugh O'Donnell, on the Autism (Scotland) Bill. We are very tight for time, so I ask that times be adhered to.
Hugh O'Donnell (Liberal Democrat)
I welcome the opportunity to open the debate on the Autism (Scotland) Bill at stage 1.
This is a simple bill with a simple objective. The intention from the outset has been to provide, in a legislative framework, a level playing field for the more than 50,000 people in the country who have autism and to give them the same opportunities to access appropriate support, education and employment as every other citizen of our country has. On the basis of the research that I have been able to carry out, the overwhelming concerns that have been expressed to me during the bill's passage and my professional experience, I can say that many of those 50,000 people have been and continue to be let down by the systems that are in place.
It is unfortunate that time prevents me from addressing all the points that were made in the Education, Lifelong Learning and Culture Committee's report. I thank the people who helped me to bring the proposal thus far in the Parliament. In particular, I thank members who supported my proposal, including members who said that they were supportive but could not sign up to the bill in the first instance, such as Bob Doris, Ian McKee and Chris Harvie. I hope that those members will be able to show their support at decision time.
Without the support of the non-Executive bills unit and many Parliament officials it would have been impossible to progress the bill. I particularly thank members of the committee, who undertook their scrutiny with due diligence and carried out their duties objectively. They have produced a comprehensive report which, notwithstanding my disagreement with its conclusions, highlights some of the issues that I sought to bring to the Parliament's attention.
I reserve my strongest words of thanks for the more than 140 respondents to the consultation. I thank the autism organisations, local authorities, health boards, professional bodies, voluntary sector organisations—which would be relevant stakeholders if the bill were to progress—and, in particular, the hundreds of people with autism and their families and carers who took the time to contact me with words of support.
Members know that trying to make life better for the people of Scotland is—or at least should be—our reason for seeking election to the Scottish Parliament, regardless of our political affiliation. We must remember that the people of Scotland put us here, and we must do right by them, particularly those who are weak and vulnerable. Many members who are present, as well as those who are not, will know from their casework and phone calls that there are serious implications for thousands of people with disabilities in these times of financial restraint and cutback. There is an easy hit on vulnerable sections of our community, and we all have a moral obligation to speak up when we see injustice. We might all be in it together, but some are definitely in it more than others are.
Autism is a unique condition. It does not sit within learning disability or sit easily within the mental health sector and, consequently, those with ASD all too often slip off the radar when it comes to the services that many others take for granted. Although it has been argued that ASD is covered by other laws, we all know from our casework just how inadequate and patchy those services are. The bill was intended to try to fill those gaps and ensure that that level of discrimination was massaged out, but it has been suggested that it might be discriminatory to enact it. However, we must reflect on the fact that, although the Disability Discrimination Act 1995 was itself discriminatory, it was acceptable because it reflected the needs of a sector of society that was being discriminated against. The same is true for the race relations legislation and various other pieces of legislation.
The bill does not create a two-tier system; we already have one. I ask members to look at the evidence and the consultation and tell me that there is not already a two-tier system for people with autism. The bill seeks to address that inequality in a small way by ensuring that those who are responsible for the delivery of services do it appropriately. What is so bad about that?
To address another challenge, what would be so terrible about other disability groups seeking legislation for strategies? Surely, especially where the most disadvantaged are concerned, if the Parliament exists for more than rhetoric, we should take seriously our responsibility and not simply make noises. We have seen the approach before: we addressed sectarianism in a bill, so why not address autism?
It has also been argued that the proposals would change nothing because a duty to "have regard to" guidance is not strong enough. Perhaps not. We all know that, throughout the country, there are people who seek to circumvent legislation if they think that it will save them responsibilities and save their purse a little bit of money, so why not make the bill stronger by
I recognise that the bill is not perfect. The committee made 27 recommendations in total, many of which could be addressed by amendments. However, at decision time, perhaps members will consider the people for whom the bill is intended to provide equal status and equal access to services. Perhaps the power of the whips will be ignored. I ask members to support the bill at stage 1.
That the Parliament agrees to the general principles of the Autism (Scotland) Bill.
Karen Whitefield (Labour)
I thank Hugh O'Donnell for introducing the Autism (Scotland) Bill, which has ensured that the Parliament is considering the needs of the autistic community. I hope that we all agree that, without the bill and the commitment and determination of the autistic community, the Scottish Government would not have published a consultation on an autism strategy. I also thank all the individuals and organisations that provided written and oral evidence to the committee, including the Minister for Public Health and Sport and her officials. All the evidence was helpful, but the oral evidence from the autistic individuals who recounted their own experiences was invaluable. Finally, I thank the Scottish Parliament information centre and the committee clerks who, as ever, provided great help and support.
We approached stage 1 scrutiny with an open mind and in the hope and expectation that the bill had the potential greatly to enhance access to public services for autistic people in Scotland. We were aware that many in the autistic community shared our expectations and, because of that weight of expectation, the committee was determined to examine the bill's proposals with the utmost care.
Concerns about the problems of language and content were raised with the committee in the course of considering the proposals in the bill and taking evidence. Section 1 of the bill places an obligation on the Government to publish an autism strategy and requires local authorities and national health service boards to respond to consultation on that strategy. The committee heard evidence that any autism strategy must be supported by
The committee strongly recommends that the Scottish Government amend its draft strategy to include mechanisms to monitor the impact and effectiveness of legislation in the area. Certain pieces of existing legislation, such as the Education (Additional Support for Learning) (Scotland) Act 2004, the Education (Additional Support for Learning) (Scotland) Act 2009 and the Equality Act 2010 could conceivably underpin an autism strategy. The prevailing view of committee members is that that legislation provides for most children and young people with autism to access public services. Despite that, some parents still struggle to access services and considerable concern remains about the quality and scope of the services that are available to adults. However, given that the ASL legislation has been in place for only a short time and the Equality Act 2010 has not yet come into force, more time is needed for their impact to be evaluated. It is therefore not clear that additional legislation is necessary at this time.
The committee was also concerned about promoting the belief that only a strategy that is underpinned by legislation can be effective. We are wary of the potential risk of creating a two-tier system of strategies, in which strategies that are not underpinned by legislation are devalued.
The bill provides for the publication of an autism strategy, but it does not indicate what that strategy should contain. Some stakeholders have expressed doubts about the style and content of the Government's draft strategy. There is nothing in the bill that would prevent the development of another strategy with similar deficiencies.
The committee was concerned that the language of the bill does not address the fundamental problem of ineffective implementation. Section 2 requires the Scottish Government to provide guidance to local authorities and NHS boards to implement the strategy, and section 3 requires local authorities and NHS boards to "have regard to" that guidance. During stage 1, views were sought on the interpretation of the phrase "have regard to". We concluded that it meant that, although organisations would have to take reasonable
Hugh O'Donnell (Liberal Democrat)
Will Karen Whitefield acknowledge that there is an opportunity with the phrase "have regard to" for a judicial review and that that would have been the focal point for that aspect of the bill?
Karen Whitefield (Labour)
The committee is keen to see that we keep autistic people out of the courts. People should not be challenging for services; they should have a right to access them, and that simply does not happen at the moment. That is one reason why we considered that very carefully.
It is important that we highlight that the bill's financial memorandum states that the bill would impose minimal costs on local authorities and NHS bodies because there is no legal requirement for them to adhere to it. That gave the committee concerns. What would we actually be doing for the autistic community?
I reiterate my thanks to Hugh O'Donnell for facilitating a much-needed examination of the provision of and access to services for autistic people. The committee recognises the importance of these issues and will continue to scrutinise the Government's autism strategy and hold the Government to account. It will recommend to its successor committee that it should continue to monitor the work of the future Scottish Government on the implementation of existing legislation.
The bill has successfully highlighted the barriers that people with autism face and has helped to focus attention on the crucial role of the Scottish Government in providing leadership across the public sector on surmounting those barriers, but the committee does not believe that the bill is sufficient to achieve that aim, so we recommend that the Parliament should not agree to its general principles.
Shona Robison (Scottish National Party)
I welcome the opportunity to debate the member's bill on autism that Hugh O'Donnell has brought before Parliament. Like others, I thank him and the Education, Lifelong Learning and Culture Committee for their efforts.
I am confident that all of us in the chamber share the common goal of wanting the lives of people with autism and their families to be improved and to be the best that they can be. A great deal has been achieved in Scotland, but we agree that the time is right for a national strategy for autism, and I acknowledge Hugh O'Donnell's role in bringing that about.
I believe that the Government's draft autism strategy, on which a period of public consultation has just concluded, will deliver what the bill sets out to do, but I am not complacent. Respondents to that consultation have made it clear that services need to improve. I accept that that is the case, which is why I am strengthening its content to include the development of service standards so that those with autism and their families will know what they can expect to be offered.
We do not need legislation to get there, particularly as we can start the process now. Following the legislative route would result in delays while the bill undertook its passage and would mean that a strategy would probably not be published until early next year, with associated guidance being delayed until the summer of 2012. I want to act now by developing a clear implementation plan, coupled with arrangements for monitoring progress.
We should recognise that the work of the national ASD reference group in implementing the recommendations of the Public Health Institute of Scotland's needs assessment report, which was supported by £4 million of funding, was a world first, but it is important that we stay ahead, and I believe that the strategy has come at the right time to ensure that we do.
Mr O'Donnell argues that a strategy that is underpinned by legislation is appropriate. My concern about adopting such an approach is that, in doing so, we would set a precedent whereby a strategy would not be viewed as a strategy unless it was underpinned by legislation. Karen Whitefield made a similar point. Furthermore, I do not believe that the evidence for the statutory legislation in England and the concerns that are being expressed by stakeholders about their expectations not being met support a legislative approach.
To that end, I support the view of the committee that ineffective legislation would disappoint people with autism and their families, who have high expectations that the bill would make meaningful changes to the services that are available to them. Legislation needs to add value and make a real difference to the lives of people with autism. I do not believe that the bill would do that, and that view is shared by the committee, which states in its report that the bill and the subsequent strategy would
"neither overcome the barriers to service delivery nor satisfy the expectations of people with autism."
However, I strongly agree that more needs to be done to ensure that existing legislation is implemented and monitored effectively. As I stated at the committee's meeting on 17 November, I will develop mechanisms to monitor and evaluate existing legislation.
Robin Harper (Green)
The minister will be aware of the reservations that exist about some of the content of "The Autism Toolbox: An Autism Resource for Scottish Schools". Can she give us any comfort as regards arrangements for continuous monitoring of the toolbox and its updating as time progresses?
Shona Robison (Scottish National Party)
I am certainly happy to give the member the reassurance that he seeks.
Much needs to be done to address the continuing concerns about waiting for diagnosis and assessment, and to improve people's experience of the transition from children's to adult services. I think that one important way of doing that is to increase the uptake of self-directed support.
Shona Robison (Scottish National Party)
I have laid out why I do not believe that legislation is required, but that is not to say that Hugh O'Donnell's bill has not raised some important issues. I am keen to reassure people that, as a Government, we take those issues extremely seriously and act accordingly.
Claire Baker (Labour)
I am happy to open the debate on behalf of Labour. As a member of the Education, Lifelong Learning and Culture Committee and as an MSP who signed the bill proposal, I very much wish to see action taken on the issues that Hugh O'Donnell has raised.
I know that many people who have lobbied for the bill and have provided evidence to the committee are disappointed by the committee's recommendations, but it is the responsibility of committee members to scrutinise proposals for legislation on the strength of the evidence and arguments that are presented to them. In this case, it is regrettable that the committee could not support the bill beyond stage 1, but I believe that that is the right decision.
However, I recognise the significance of the bill and what it has already achieved. When Hugh O'Donnell sought support for his bill, Scotland was the only part of the United Kingdom not to have an autism strategy. The Scottish Government at that
Adults and children on the autism spectrum often face a daily struggle for access to services that many of us take for granted. There is a postcode lottery of services across Scotland, there is a real need to address transitions to adulthood, there must be improved communication and involvement in decision making for parents and young people, there needs to be more access to employment support services, and there must be an increased awareness of the often simple steps that can make many everyday services more accessible.
Since being elected, I have worked closely with autism groups in my region and have tried to support them in any way I can. Last year, I met a group of parents of children and young people who are on the autism spectrum. That meeting highlighted to me the key issue of transition to adulthood services, which came up time and again in the evidence that was presented to the committee. For those young people, services seem to drop off just at the point when they are faced with new challenges of further education or employment. The Parliament must take the lead in dramatically improving the services that are available to young people. We are selling the young people short, and we are selling ourselves short as we miss out on the talents that such young people can bring to our communities and economy.
As proposed, the bill would place an obligation on the Scottish Government to produce a strategy but it does not detail what a strategy should include. The bill's proposal to place the Scottish Government under an obligation to publish guidance that local authorities and the NHS must "have regard to" in delivering services led to questions about whether that would make a meaningful difference to service delivery. The lack of financial commitment to improve services raised the concern that there was a danger that, although the bill would be perceived as achieving change and giving status to the strategy, the lightness of the term "have regard to" would make it ineffectual and largely disregarded.
Labour firmly agrees with the proposer of the bill that there needs to be change. I know that there are still concerns with the strategy that is under consultation. It is important that the Scottish Government listens to those concerns and that we have a robust strategy that will bring positive
At the heart of moving forward on the strategy, and in delivering the change that we all want to see is the need for meaningful engagement. Labour welcomes the reinstatement of the reference group, but we believe that it should include key stakeholders, including carers and service users. The group could play a valuable role in monitoring the implementation of any strategy into the future and could have a relationship with Parliament that ensures that we all work together to make life better for service users and their families.
Elizabeth Smith (Conservative)
It has been very important to have the debate, and I pay tribute to the professional manner in which Hugh O'Donnell has set about representing the best interests of the autistic population and to the assistance that he provided to the committee in flagging up what he saw as the deficiencies with the status quo. No one doubts that we need to do more. We need to ensure that there is no postcode lottery when it comes to support; we need better information and earlier detection in nurseries and in schools; and we need to ensure that those with autism are given as much help in adulthood as they are in childhood.
It is the duty of any committee in the Parliament to scrutinise fully the evidence before it, to weigh up the arguments on all sides of the debate, and to ensure that no stone is left unturned when it comes to seeking the best possible outcome for those whose best interests are at stake.
Quite naturally, the debate has at times been emotive, passionate and challenging, but that is a good thing as it has allowed all of us to tease out every aspect of the main concerns brought out by the proponents of the bill. I pay tribute to all those who provided us with evidence and to all those who have written in to highlight their own concerns. Almost without exception, those representations have been sincere, articulate,
Let me be clear: there has been no disagreement across the chamber that we have to support people with autism—a point acknowledged by the health minister. Rather, the debate is specifically about whether we need legislation to make that possible. To make that assessment, we were required to make a level-headed judgment about what benefits legislation could bring that a non-legislative process could not.
Let me deal with the three most important concerns. First, there is concern among many autistic groups and their support services that they face significant challenges, especially when it comes to accessing public services. Secondly, the strong point was made that, unless a strategy is backed by legislation, it will not be implemented, because there is no compulsion on local authorities to do so. In other words, a postcode lottery could remain in how well local authorities make provision. Thirdly, there was the overriding concern that many adults with autism suffer undetected and in social and economic isolation.
None of the concerns is inconsiderable but, at the end of the day, we needed to question whether the existing legislation is satisfactory in addressing the concerns of people with autism and, if the answer was no, what examples could be found to show how new legislation could improve the outcomes.
In each case, I, like my committee colleagues, was persuaded by much of the evidence. I was not, however, persuaded about the need for legislation. Let me explain why. First, it could easily be argued—indeed, it has been argued—by other groups that autism is not alone in requiring better support. Exactly the same demands about a strategy could be made for sufferers of Alzheimer's, Parkinson's, motor neurone disease and many other conditions. They, too, have a good cause and, from both a practical as well as legal position—not to mention the cost factor—it would prove exceedingly difficult to avoid a discriminatory situation that would set a precedent for extensive and costly legislation across the board.
Secondly, the committee found it difficult to find specific examples of legislative changes that would bring additional benefits that would not already be available if the existing legislation were working properly. I suggest that perhaps one difficulty in measuring all of this is the relatively embryonic stages of the Education (Additional Support for Learning) (Scotland) Act 2009, which has not yet had sufficient time to bear fruit,
I know only too well that Hugh O'Donnell and many people who provided evidence are likely to feel bitterly disappointed and perhaps badly let down by the committee. I understand that, but I want them to know that we have gone through the proposal with a fine-tooth comb and I think that we have made the right judgment.
Margaret Smith (Liberal Democrat)
I welcome the opportunity to speak in the debate. I begin by adding my thanks to all those who gave evidence to the committee and the clerks for their work in the preparation of the report. Those who gave informal evidence deserve special mention. The personal and compelling accounts that they gave of their experiences formed a strong component not only of the committee's discussions but of the report.
I also thank my colleague Hugh O'Donnell for bringing forward the bill. When he introduced it, there was no Government strategy and none was planned. As Claire Baker said, Scotland was the only part of the United Kingdom without such a strategy. It is clear to me—and, I believe, to committee colleagues—that the pressure that Hugh O'Donnell placed on the Government resulted in its bringing forward a strategy that effectively delivers the first half of the bill. That is a significant victory, and Hugh deserves praise for his determination and hard work on this most important issue. It should also be seen as a victory for the process that the Government has been receptive to the approach. Indeed, the committee has played its part, too.
Each and every one of us comes across individuals and families who are struggling to cope because of the impact that autism has on their lives. That is why I and many colleagues throughout the chamber supported the bill when it was introduced. We wanted to ensure that the issue was properly discussed and that a strategy was put in place that would make a difference to people's lives.
The decision whether to support the bill at stage 1 was a difficult one for the committee. In fact, it was an agonising one—one of the hardest in my 12 years as a member of the Parliament. We are all aware of the strength of feeling behind the bill and of the fact that our stage 1 report has been disappointing to many people. We are in no doubt that too many families who are affected by autism face a battle to gain access to the help and
The minister has said that she, within the Government, believes that services need to improve, and we all agree with her. I am pleased that, since the introduction of the bill, the Government has produced a draft autism strategy for consultation. However, the Government must ensure that it is a robust strategy that will result in on-the-ground improvements for people with autism, their families and their carers.
Although the committee is wholly supportive of an increase in support for those with autism, we had concerns about the bill. We had concerns about whether the changes and improvements that we all want to see, which I will come to in due course, need to come about through legislation. Nevertheless, the committee has not ruled out the possibility that legislation may be needed if progress is not made in other ways. A legacy paper will be put to our successors in the next session to ensure that, if sufficient improvement is not made as a result of the strategy, that committee should consider producing legislation at that time. The committee has also requested a meeting with the minister before the end of the current session to discuss the strategy. Whichever political party or parties form the next Government need to know that the Parliament is watching and monitoring progress on the strategy and that it must deliver improvements.
During the passage of the bill so far, I have found the differing positions held by the two principal organisations that represent people with autism challenging. The National Autistic Society Scotland supports the bill, but the Scottish Society for Autism does not. It is fair to say that that difference of opinion made some of the committee's considerations and the private deliberations of its members more difficult and thought provoking.
Although it is clear that some people in the autism community are not happy with the committee's decision, others support the approach on which we have agreed. It was not an easy decision to reach, and I am aware that many people who are living with autism will feel that they have not been listened to. I assure them that that is not the case. We have listened carefully to all the arguments and evidence that have been put before us. However, at this point, we are minded to agree with those individuals and families who are represented by the Scottish Society for Autism, which is calling for a strategy that is not underpinned by legislation.
The second aspect of the bill is that it would place a duty on NHS bodies and local authorities to "have regard to" any guidance that is issued.
The committee was concerned that that would not be strong enough to ensure that the bill had a real impact on the lives of those who need effective support and efficient services.
Margaret Smith (Liberal Democrat)
Although, for those reasons and others that I have not had the chance to cover because I have run out of time, we will not support the bill today, I emphasise our continuing commitment to raise the standard of support for people with autism and I put on record my admiration for the work that has been carried out by Hugh O'Donnell. That work has led directly to a Government strategy on autism, a continuing interest being taken by the Health and Sport Committee in the effects of that strategy and a clear challenge for the next Government and the next Parliament of Scotland.
Christina McKelvie (Scottish National Party)
I echo the comments of all those who have spoken about how well intentioned the bill is. It has certainly put the issues that people with autism face back up the agenda. The consultation on the bill encouraged the minister to reconvene the ASD reference group, which included all the stakeholders, and that group developed a draft strategy that is currently being consulted on. The committee noted that since the bill was introduced, the Scottish Government has consulted on the draft autism strategy, which is entitled, "Towards an Autism Strategy for Scotland".
The bill has two main aspects: to develop a strategy and to give local authorities and NHS bodies a duty to "have regard to" that strategy. I pursued the issue of the duty to have regard to the strategy with numerous witnesses during committee evidence sessions, but it was difficult for the committee to take a position on the matter because the witnesses did not seem to know how that would work in practice. The main point is what happens in practice to develop services and to address people's needs. In my opinion, a duty to "have regard to" the strategy would be so open to interpretation that it would not deliver the improvements to service delivery that people with autism need and want.
We spoke a lot in the committee about the Education (Additional Support for Learning) (Scotland) Act 2009. One of the best aspects of that act was that it tidied up the legislative landscape of support for children. The act has not been in place long and, in my opinion, it is too early to determine whether it has made any real improvements. I urge the committee that will be given responsibility for education after the election
One of the other big issues that we face concerns the adults of today who have autism. Legislation that is relevant in that regard includes the Equality Act 2010, which needs time to bed in and to be used effectively by people with autism to ensure that they get access to the services that they need.
Nothing would do a bigger disservice to people with autism and to the parents of children with autism who need access to the necessary services than would the creation of new and overlapping legislation through which they would have to find their way before they could claim the support to which they are entitled. Even with the support of those who have been through the system, the process is never easy so we should not make it any harder.
My concern is that the bill would disappoint the very people whom it seeks to support. Members of the committee did a lot of soul-searching and discussed the matter publicly and in private in an attempt to work out what the bill would deliver. We heard powerful evidence from adults with autism who bravely and eloquently told us their stories, which were of raised expectations, of continued disappointments, of misdiagnosis, of being pigeonholed in the learning disability category or in the category of people with mental disabilities, and of being given treatments that in some cases did more harm than good. In all honesty, I could not support a bill that would continue to inflict that kind of disappointment on the people who gave us that evidence.
I believe that the Government's strategy will help to move the issue forward. I have spoken to the minister on the matter and I urge the Government to monitor the strategy. I also urge the committee that will have responsibility for education after the election to monitor the strategy as well, because that dual scrutiny is important.
I congratulate Hugh O'Donnell on bringing the issue to the fore and I encourage everyone who has an interest in the matter to do what they can to keep us politicians on the right track. We must all work together: the stakeholders, the parliamentarians and the service users, who can tell us what they need. If we scrutinise properly what is being done and ensure that it develops in the right way, we can improve services for people with autism through the strategy, without the need for legislation.
Elaine Smith (Labour)
As others have done, I commend Hugh O'Donnell for bringing to the Parliament the issues of autism and gaps in autism services and support. It is enormously to his credit that he has done so, and his work ought to be applauded by all of us.
I signed the original bill proposal for several reasons. First, I know the personal commitment of Hugh O'Donnell to the subject, so I was keen to allow him the opportunity to explore legislation. Secondly, like others, I have dealt with many issues involving constituents who are on the autistic spectrum or who are parents of children with autism, so I know the problems and frustrations that they face. Thirdly, I spent many years on the cross-party group on autistic spectrum disorder, so I am aware of the many failures in our system with regard to supporting and assisting people with autism.
In a debate in the chamber in 2002, Lloyd Quinan, the then convener of the cross-party group, said:
"the range of services that are delivered must be seamlessly delivered and planned and developed in a multi-agency way. I have frequently talked about the necessity for a national strategy that is focused on the individual and that uses multi-agency methods and many members have agreed with me."—[Official Report, 15 May 2002; c 8913.]
He was right. A strategy is not a new idea, but it is clearly much needed and long overdue. I am pleased that the Government has made a commitment to taking that forward.
After undertaking its scrutiny, the committee did not agree that the bill is supportable. I feel that the Parliament needs to heed its findings at this time, but that does not mean that it should do nothing. The committee agreed that the strategy needs to enable public bodies to focus their policies and services better on the needs and requirements of people with autism; it just does not believe that legislation is needed to achieve that. It thinks—as Christina McKelvie outlined—that the bill is not strong enough, and that in terms of specifying needs the bill simply expects the NHS and local government to "have regard to" the guidance, and therefore lacks teeth.
As we know, autism is a lifelong developmental disability that affects how a person communicates with and relates to other people and the world around them. People with autism have difficulty with social communication, social interaction and social imagination. The condition is a spectrum, so everyone who has it will share certain traits and difficulties, but it must be stressed that each person is an individual with their own unique needs. Services that are appropriate to specific
There is a definite need for continuity and person-centred planning throughout a person's life, so I make a plea for that to be at the heart of the Government's strategy. The Parliament passed the 2004 act, which should help in education situations. Parents encounter many issues—including getting a diagnosis, finding appropriate help and getting the right school or nursery place—with which they need assistance, and they seem to be battling all the time. Nonetheless, services that are supplied by councils, particularly in education, are improving, although other services are still lacking. We need a directory of good practice; that would be really helpful.
Specialist support for children, such as sensory rooms, activities such as horse riding and other provisions, are not commonplace, and if those have to be sourced privately they can be beyond the financial reach of ordinary people. That is something else that should be considered.
There is a lack of provision for adults, and a need for further research and information, particularly with regard to employment issues. As the National Autistic Society has highlighted, only 15 per cent of adults with autism in the UK are in full-time paid employment, in comparison with around 50 per cent of disabled people overall. It is bad not only for individuals not to be working, in terms of their prospects and self-confidence, but bad for society more generally, so that must be addressed.
We must commend the work of the Scottish Society for Autism, and local groups, such as HOPE for Autism in my area. I am sorry that it does not appear that Hugh O'Donnell's bill will make it past the initial scrutiny stage, but that does not mean that members are against the idea—far from it. I am pleased that the Labour Party is taking the issue seriously; we would be committed to a national strategy, but one that is very much backed by resources.
Although I do not intend to support the bill in its current form today—which has nothing to do with whips, and everything to do with the committee report—I expect action on the issues that have been raised, and I commend Hugh O'Donnell.
Christopher Harvie (Scottish National Party)
I greatly appreciate the concerns that inspired Hugh O'Donnell's Autism (Scotland) Bill. However, I am also aware of the concerns that the Education, Lifelong Learning and Culture Committee raised in its stage 1 report, including the question whether, if legislation has so far not
I want to highlight two aspects. The first is the need to establish proper census data instead of using the numbers that we have at present, which are overall projections that are modified on a population percentage basis and may therefore bear no real relation to the actual figures.
The second aspect is the need to distinguish those who are affected by high-level autism, or Asperger's syndrome, which the Germans call Gelehrtenkrankheit—the disease of the wise. I must make a personal statement at this point, because my wife Virginia, who died of cancer in 2005, suffered from a mild element of that. She could be socially impossible at times; on the other hand, she took a first in logic, and she could read an entire Tolstoy novel in a day and answer the most detailed questions on it, which is one aspect of the intensified and almost intuitive ability that comes from that particular condition. I have her in mind when I talk about it.
As a historian, I also have in mind the importance of the lad o pairts—the gifted—in Scottish economic development. I am thinking of people such as Hugh Miller, who had the Bible and Shakespeare off by heart; Walter Scott, who could write without realising that he was writing; and Charles Rennie Mackintosh, who obsessively designed his houses right down to the knives and forks. That is part of a particular mental structure, but it can, if it is conserved and protected, bring enormous value to our society, as it has done in the past. The French social anthropologist Emmanuel Todd has studied Scottish 18th century society and the protection that it gave to the gifted within its extended families.
I would like to look in much greater detail at the ways in which we can provide pulling and shoving assistance to people who have an autistic condition that means that they must receive lifetime support. I see the matter in the context of a younger generation in Scotland who are not themselves fully confident about their own futures. A recent report drew attention to the fact that a quarter of our teenage children have depressive conditions when they see the society in which they are placed. I would like to see strong encouragement of people to volunteer to do such work. In Germany, many of my students benefited greatly from the experience of doing such social work before they came up to university. It contributed to their articulacy and to their social commitment.
What I would like to see coming from the debate—I appreciate the caveats that can be made about the bill itself—is a commitment to establishing real statistics about the incidence of
Robert Brown (Liberal Democrat)
It is interesting that Christopher Harvie, in his usual idiosyncratic and very personal style, made the observations that he did about people who are gifted. That was quite a good way in which to end the open debate, because it seems to me that people with autism can range from people with considerable gifts to people who face quite significant challenges for themselves and, sometimes, for their families. I have knowledge of quite a few constituency cases and situations in groups that I have dealt with over the years in this context, which gives me a degree of understanding of some of the issues.
I congratulate my friend and colleague Hugh O'Donnell on pioneering and taking this member's bill forward to this stage. It is very clear—it has been acknowledged around the chamber—that the pressure that has been exerted by the bill has been instrumental in pushing the Scottish Government into developing a draft strategy on autism, which was perhaps otherwise not going to happen. As Margaret Smith rightly said, that is a victory for Hugh and a victory and a success for the process.
It has been said in the debate and in other contexts that there cannot be a strategy, far less a member's bill, on every ailment, disease or condition. That is undoubtedly true and is the central reason why the committee recommended that the bill not proceed. However, I have to say that—as Hugh O'Donnell mentioned—people with autism are often ill-served by the current uneasy place that the condition holds somewhere between mental health and learning support. It is a long-term health condition in certain respects and a developmental issue in others. Autism is not a mental health problem but, as we know, it can lead to mental health difficulties. I know from my constituency case load that people with autism can sometimes come into the reach of mental health services as a result of actions on or attitudes to their autism and their circumstances. I know, too, that when that happens people are sometimes treated appallingly and are perhaps left with little or no support. There is often little
Similarly, it has often proved to be a battle to ensure that services that understand and accommodate the needs of children with autism are not just lumped in under additional support needs generally: their requirements and support needs are often different. That is currently, to an extent, being exacerbated as some local authorities review—or "rationalise", as it is often described—their additional support needs provision. It is vital that autism has specific and separate recognition as part of that process, although, of course, there are also links across a number of other areas.
Considerable strides have been made in recent years in identifying young people with autism and assessing their needs. The Education (Additional Support for Learning) (Scotland) Act 2004, which Karen Whitefield mentioned, went through Parliament when I was in the position that she now holds of convener of what was then the Education Committee. The act provided a major stimulus to better support with, I have to say, some finance going with it.
However, it can still be a battle for many parents and young people and there are undoubted problems with the transition to college, university or work. The figures, as mentioned by others, are compelling: 50,000 people who live with autism claim costs across the UK of £27.5 billion a year. Much of the costs could be avoided were the right support in place locally and readily, but one in three families has to resort to tribunal, and a quarter of them seek support from services outside their local area.
We have heard discussion about the "have regard to" wording in the bill and the judicial review issue. I instantly agreed with Karen Whitefield's comment that the last thing on earth that we want is to have people in court over such issues. The committee was right to take the view that it took on that point. The bill would not change services, but as the lead-in to the strategy, I hope that it will provide the stimulus to put in place a better understanding and better resources. It is not always about resources; it is often about understanding and the links that will help people. Elaine Smith talked about taking a more person-centred approach, which ties in exactly with that.
Hugh O'Donnell has done a sterling job and has served well the cause of people with autism. The bill has done its job and the necessary prod has been administered to the Government. The task is now to bring the strategy to life in as relevant and viable a form as possible.
Nanette Milne (Conservative)
Among the first constituents whom I encountered in my role as an MSP were the parents and carers of a group of autistic Aberdeenshire children who felt that those children's needs were not being met adequately by the services that were available to them. I doubt that that has changed significantly in the past few years.
As we know, people on the autistic spectrum vary enormously, from those who have minor communication difficulties, as cited by Christopher Harvie, right through to those who are severely affected, have extremely complex needs and require highly specialist care, peaceful surroundings and a well-established routine if they are to have any hope of achieving their potential, however limited it might be.
Autism does not end with childhood; it is a lifelong condition. It is, therefore, important that people on the spectrum are identified early and provided for into adult life so that they do not miss out on life's opportunities because they are disregarded by society.
Currently, there are undoubtedly gaps in provision. As well as coping with the significant daily problems of caring for an autistic child, many parents have a battle on their hands to secure appropriate therapies and schooling for their offspring. Many adults are living isolated lives, unable to integrate into society and make full use of the talents that they possess.
I am in no doubt that much more needs to be done to help those who suffer from autism. When Hugh O'Donnell presented his proposals for an autism bill, I was happy to give him my support so that they could be scrutinised by Parliament. I congratulate the Education, Lifelong Learning and Culture Committee on doing that so professionally and thoroughly. It is clear from reading the committee report and from discussions with my colleague Liz Smith, who is a member of the committee, that the debate has polarised not around whether help is needed for people with autism, but whether new legislation is the best way to achieve that. Contributions have been informed and passionate, and opinions have been varied, with even specialist organisations such as the National Autistic Society Scotland and the Scottish Society for Autism having differing opinions on whether the legislative route is the best way forward.
There is general agreement that if individuals with autism are to receive the support that they need, a robust autism strategy is required to enable public bodies to focus on more effective delivery of services to those people. As we know, the Scottish Government is in the process of
The consensus of the committee was that to be effective, such a strategy does not need to be set in statute, particularly when legislation exists that would, if properly implemented, result in better support, not only for people with ASD but for people with other conditions, such as Alzheimer's and Parkinson's, who also find it difficult to access services consistently across Scotland. That seems to me to be the responsible approach. If the enforcement of existing law, coupled with an autism strategy for Scotland, does not result in the desired improvement in service availability, then the legislative route can be looked at again, as the committee flagged up.
I fully understand the concerns of the many people who have urged us to support Hugh O'Donnell's bill and who will feel their disappointment keenly if Parliament does not agree to its general principles. However, I have to accept the view of the committee, which has examined the proposals with an open mind and in very great detail so, like my colleague Elizabeth Smith, I will vote against the bill at decision time.
That said, if the bill is defeated today, all of us as responsible members of this Parliament have a clear duty to ensure that the Government's proposed autism strategy is indeed robust and properly implemented, so that all those who suffer from autism will in the future receive the help and support that many people currently cannot access but to which, in a modern and caring society, they are entitled.
Kenneth Macintosh (Labour)
I am sure that all of us in the chamber agree that it is a real privilege to be an MSP—indeed, the voters will be reminding us of that in three months—and that that privilege lies in the way in which we are invited into people's lives to share their dreams and aspirations and to stand by, stand with and stand up for them in the struggles and challenges that they face. That privilege has never been brought home to me more forcefully than it has in my dealings and conversations with constituents who are struggling with autism.
When I became an MSP, I knew very little about autism and, like Nanette Milne, I remember how moved I was when I first met families who came to me for support and help, told me about the stresses and strains in their lives and enlightened me about the battles that they were wrestling with. Nearly all the cases centred on the needs of children or young people with autism and focused on their battles with local education authorities
However, Hugh O'Donnell's bill has opened my eyes once again—this time to the ongoing difficulties and the different levels of frustration that are experienced by adults with autism. I am certainly not saying that the ASL acts have resolved the many challenges that families face—far from it. The minister, Karen Whitefield and Liz Smith all alluded to the need for more time to evaluate the impact of that legislation. I am still shocked to hear how many families split up as a result of the strain of fighting for services and support for their children.
Some of the most powerful evidence that the committee heard was provided by young autistic adults who simply want to contribute, to work, to have a job and to be seen as individuals but who instead felt and continue to feel marginalised, stigmatised, unsupported and treated as outsiders. Like Margaret Smith, I found their arguments to be not only emotionally compelling, but financially and economically persuasive. For example, they pointed out that most adults with autism remain unproductive when they could be profitably employed and be far more economically active members of our society. As Elaine Smith pointed out, only 15 per cent of adults with ASD are in full-time employment.
As we reach the end of stage 1, my feelings about the bill include both hope and disappointment: hope, because we have helped to put autism back at the top of the political agenda, and disappointment that as a Parliament we have not been able to support the bill. In that regard, I thank Liz Smith and Claire Baker for their speeches, which captured the committee's regret.
As many members will know, I did not agree with my committee colleagues on all the report's conclusions, but I have to recognise that the evidence that we received was not overwhelming. It was particularly difficult to unite around the bill when the two major societies, the National Autistic Society Scotland and the Scottish Society for Autism, expressed different views, and when there are clearly differences of opinion within the autistic community over whether we need legislation at all.
However, to strike a more helpful, hopeful and encouraging note, I think that it is quite clear that simply by introducing the bill Hugh O'Donnell has provoked the Scottish Government into further action, so I congratulate the minister on the publication of the consultation on an autism strategy. From the speeches that have been made by members on all sides of the chamber and from comments that were made in committee, I believe that all parties agree that we need to move to the
Despite my mixed feelings in this debate and about this bill, I congratulate the National Autistic Society Scotland in particular on promoting the bill, Hugh O'Donnell on introducing it and all members on re-engaging with autism in Scotland. Elaine Smith put it very nicely: heeding the Education, Lifelong Learning and Culture Committee's findings does not mean that nothing should be done, but that other avenues must be pursued in order—one hopes—to move us forward to the next stage of improving support for people with autism.
Shona Robison (Scottish National Party)
It is clear from the debate that members across the chamber are very keen to see improvement in service provision for people with autism and their families. The debate has been consensual and I have been heartened by members' genuine commitment to do more to build on the foundations that are in place and to ensure that further improvements can be made to services and to people's lives.
I have noted throughout the debate that members have raised several concerns about whether the member's bill would deliver what it set out to do. I will not rehearse all the points, but I will refer to some of them. Claire Baker said that the committee's legacy paper would be important in keeping the issue on the boil. That suggestion is sensible. She and Ken Macintosh called for an extension to the reference group's membership, which I am sure we can consider further.
Margaret Smith talked about the need for a robust strategy that would deliver change. That is absolutely the challenge and is most important. However, it is worth saying that it is not all about the autism strategy. The strategy will have to make links to other really important initiatives, which are in some ways equally important and which can—and, I believe, will—make a fundamental difference to the lives of people with autism.
In appearing before the committee, I talked extensively about the self-directed support strategy and the bill that is to follow. The information and evidence from the test sites that have operated tell us that one group that benefits most from the change to self-directed support—
Christina McKelvie talked about monitoring of the strategy by the Government and the committee, which I welcome. That dual approach to ensure that we continue to ask questions and to monitor the strategy, its development and delivery is critical.
As other members said, Chris Harvie made several important points. What he said boiled down to the benefits to society of encouraging and allowing the blossoming of people's lives. It is clear to me and to other members that many people do not realise their potential, because services are not responsive enough and they do not have the life chances that many of us take for granted. Chris Harvie hit the nail on the head—the issue about is opening up opportunities to people.
As Nanette Milne said, people with autism differ hugely across the spectrum. I have no doubt that, with the right support, even people with autism who have profound difficulties would be able to do many things in their lives—things that would enrich the quality of their lives.
We have to ensure that services are responsive. That does not necessarily mean that services have to be more expensive or complicated; it means freeing up things, thinking differently about the type of services that people want and delivering them differently.
Shona Robison (Scottish National Party)
Some of the work that is being done around self-directed support tells us that that can be achieved, not necessarily for more cost but by listening about what people's priorities are and what is important in their lives.
I have one final point to make, Presiding Officer. During the course of the debate, I have not been able to furnish Parliament with the figures on future resources for autism. I have made a commitment to go back to the Education, Lifelong Learning and Culture Committee with that
Hugh O'Donnell (Liberal Democrat)
First, I thank colleagues for their support and comments. However, I think that I will be disappointed at six o'clock this evening. That is the nature of taking forward a member's bill.
Much as I would like to, I cannot let my contribution ignore Governments—I use that word advisedly to try to avoid making what I am about to say a dig at the current Government. Governments and ministers come and go, but the one constant in the 12 or so years of the Parliament has been the departments, however they are rejigged. Ministers have big responsibilities and, never having been a minister or part of a party that has a minister, I am not quite sure how things get to the top of a minister's list. However, it is pretty certain that had it not been for the publication of the bill proposal, the strategy would never have seen the light of day. It is also pretty certain that had it not been for the proposal, the reference group would never have been reconvened. It is also pretty certain—this may run contrary to normal protocols in this place—that, notwithstanding the support that the current minister has given me in some ways, serious attempts were made behind the scenes to undermine the bill from the start. That is very regrettable.
It is very regrettable that a former member of the Scottish Parliament had to defend my motivation within the autism reference group. That is not acceptable. It is also not appropriate for Government officials to provide a private briefing to a committee on a member's bill. For officials not to give that evidence on the record—they did so subsequently—is regrettable. They did not even discuss the bill; in fact, they discussed the Government's proposed strategy. I ask the Standards, Procedures and Public Appointments to look closely at the matter. In my view—and using perhaps a west of Scotland description—what they did was nothing short of sleekit. Regardless of which Government is in office, that is not acceptable. I want to make it clear: I am not making a party-political point. I was unfamiliar with the process for a member's bill and I was puzzled by what went on.
I got the sense that what happened was founded entirely on embarrassment that nothing had been done for people with autism since the Parliament's establishment in 1999. The issue had been left to sit on the back burner, taking second place. I know that we have autism toolkits, but local authorities were having to be freedom of information requested so that parents could get
Shona Robison (Scottish National Party)
I will not dwell on all of Hugh O'Donnell's points, because that would not be terribly helpful. However, I pay a bit of a tribute to the previous Administration by saying that he must recognise that a lot of work was done by the reference group—£4 million was a significant investment in autism.
I have conceded that Hugh O'Donnell's actions have convinced us all that more work has to be done. Surely, at this point, it would be better to agree on that and to move forward in the spirit of co-operation.
Hugh O'Donnell (Liberal Democrat)
I am happy to acknowledge the work that was done by previous Administrations. What still concerns me is that that work was laid to one side until this bill was proposed. If things are worth doing, they are worth doing; they are not worth putting on the back burner, and the 50,000 or so people with autism, their carers and their families deserve the bill to go forward.
I welcome the minister's commitment today to the strategy. If I am successful in being re-elected to Parliament, I—and, I have heard, the committee—will monitor what progress is made on the strategy to ensure that we do not have to have the same debate in another 12 years' time.