Meeting of the Parliament (Hybrid)

Meeting date: Tuesday, April 19, 2022

Official Report 941KB pdf

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Down Syndrome Bill

The final item of business is a members’ business debate on motion S6M-02795, in the name of Jeremy Balfour, on welcoming the Down Syndrome Bill. The debate will be concluded without any questions being put. I encourage those who wish to participate to press their request-to-speak buttons now or as soon as possible. I call on Jeremy Balfour to open the debate for around seven minutes, Mr Balfour.

Motion debated,

That the Parliament welcomes the Down Syndrome Bill, introduced in the UK Parliament by Dr Liam Fox in June 2021; understands that it received cross-party support in the UK Parliament at its second reading in November 2021; welcomes what it considers the supportive comments made during the second reading from Douglas Chapman, the Scottish National Party MP for Dunfermline and West Fife; understands that, as introduced, the Bill extends to England and Wales, but that it could be extended further to apply to Scotland, and notes the calls on the Scottish Government to facilitate this opportunity to, it considers, improve the services offered to people with Down syndrome and to place a duty on local authorities and public bodies to assess the likely support needs, including education, health and social care, employment and independent living needs, of people with Down syndrome, and plan provision accordingly.

17:27  

I will declare an interest and say that I have a niece and two cousins who all have Down’s syndrome.

I begin by thanking those members from across the chamber who have supported my motion and members’ business debate. It has been great to see support from almost all parties, although I am disappointed that the Greens decided not to support it. I find it sad that they could not bring themselves to put politics aside for the sake of the Down’s syndrome community.

I also thank Dr Liam Fox. His bill has been long anticipated, and it sends a clear message to a community in this country that has felt left behind, undervalued, and ignored for a long time. I am in no way saying that the story will end with the passing of the bill because it is clear that there is still a long way to go, but it is certainly a large step in the right direction.

I have to admit that this is not the speech that I had planned to give, nor is it a speech that I particularly want to give. My original speech was going to extol the virtues of the bill. I was going to describe how placing a concrete responsibility on local authorities to accommodate those with Down’s syndrome will create a much less hostile environment than the one that they unfortunately have been used to.

I was going to petition the Scottish Government to adopt the bill and allow it to be a United Kingdom-wide piece of legislation. As drafted, the bill extends to England and Wales, although there was a possibility for the people of Scotland to benefit from it. The Down’s community in Scotland could have had the same protection as England and Wales. Given the fact that a Scottish National Party member of Parliament had publicly supported the bill, I was hopeful. Mr Chapman said in the second stage debate:

“I hope that, should it be passed, our colleagues in Wales, Northern Ireland and Scotland will look at it sympathetically and introduce equivalent measures across the UK. I wish the Bill Godspeed.”—[Official Report, House of Commons, 26 November 2021; Vol 704, c 580.]

It is now too late. The bill has passed through the Commons and the Lords and is awaiting royal assent. To the delight of those with Down’s syndrome in England and Wales, new protections and rights are only a signature away from being a reality. Those in Scotland, however, are left with a hollow feeling, wondering what possible reason there could be for the SNP to refuse to support them in this way. The answer is that there is no good reason. A political decision has been taken by a Scottish Government that is so caught up in a constitutional battle and grievance politics that it cannot even support the Down’s syndrome community, and whose fear of deviating from saying “Westminster is bad” even overrules issues affecting those with disabilities.

During the past 15 years, the whole of Scotland has suffered from the SNP dropping the ball on issues such as drug deaths, accident and emergency waiting times and educational standards, while the Government’s eyes have been on its constitutional obsession, but the disability community feels uniquely cast aside. Let us have a look back at even just the past couple of years. During the pandemic, face masks presented a great problem for those who are hard of hearing. They muffled people’s voices and made it impossible for those who rely on lip reading to interact with and participate in society. While health boards around the UK approved clear face masks, the Scottish Government dragged its heels and it was not until December 2021—almost two years after the beginning of the pandemic—that NHS Scotland provided doctors with them. The SNP refused to prioritise the disability community yet again.

Another prime example is the unfolding ferries fiasco. Although it is undeniable that lots of mistakes have been made, changing places toilets could have been included in the design. They are the gold standard of disabled facilities that provide for all the needs a disabled person might have, but more than that, they send a message to the disabled community that they are welcome in a place and can travel freely.

My colleague Jamie Halcro Johnston asked the Scottish Government whether the plans for the two new ferries included changing places toilets and the short answer was no, they include no such toilet. The answer seemed to imply that the Minister for Transport did not understand that a changing places toilet is more than just a disabled toilet with changing facilities. Once again, the SNP refuses to make the inclusion of the disabled community a priority.

Those are just two examples, but they show the Scottish Government’s attitude and the reason behind tonight’s debate.

There were no good reasons for the Scottish Government to oppose the bill. It will tell us that it is planning something bigger and better and more tartan, but that is simply an excuse. The UK bill does not need to be exhaustive, and it in no way prevents the Scottish Government from going further with future legislation. This was a political decision that used Down’s syndrome as a pawn for the sake of scoring cheap points against a Government that is taking the issue seriously. The result is that even if the SNP introduces its own bill, those with Down’s syndrome in Scotland will be forced to wait an unnecessary length of time. Unlike those in England and Wales who now have these rights, we do not have them in Scotland. Stronger For Scotland? I think not, and certainly not stronger for the disabled community.

17:34  

I thank Jeremy Balfour for bringing his motion to the chamber. I must also give a wee shout out to an inspirational family member with Down’s syndrome—I will call him Mr T—who can wow you with his music knowledge and make you smile every day of the week.

Like my colleague in Westminster, Douglas Chapman, I want to offer supportive comments on the Down Syndrome Bill for England and Wales. The bill sets out to destigmatise Down’s syndrome, improve services and deal with issues such as long-term care. It will require the UK Government to publish guidance on the specific needs of people with Down’s syndrome and how those needs should be met. With legal protections in place, it is hoped that the bill will make it easier for people with Down’s syndrome and their families to secure the services that they need and to challenge authorities that are not acting on their duties.

However, although I support the intentions behind the Down Syndrome Bill, I believe that the approach laid out by the Scottish Government has clear advantages as it looks to secure and sustain the transformative change that is overdue for people with Down’s syndrome who live in Scotland. The Scottish Government is committed to introducing a learning disability, autism and neurodiversity bill as part of the programme for government. In addition, a welcome learning disability commissioner role will be created. The bill and the associated commissioner will ensure that the rights of people with Down’s syndrome, among others, are respected and protected.

The inclusive rights-based approach in Scotland—a pan learning disability, autism and neurodiversity approach—is attracting a lot of attention from other parts of the United Kingdom. That is because it avoids the situation in which one group is singled out and prioritised over another in the delivery of public services. Instead, our approach recognises people’s distinctive needs while protecting the rights of all those with learning disabilities.

Organisations such as Down’s Syndrome Scotland have told me that they are encouraged by the timetable for developing and introducing the learning disability bill in Scotland, and they are equally impressed by the Scottish Government’s determination to ensure that people with lived experience are fully and meaningfully engaged in the consultation on the bill’s scope, ambition and policy position. Their voices are so important. The Scottish Government’s programme provides the community—and that is parents, carers and adults with Down’s syndrome—with the time and the space to meaningfully express their views in ways that are inclusive, accessible, respectful and rights based.

When I spoke on the international day of persons with disabilities, I focused my speech on the importance of the words “nothing about us without us”. One of the criticisms of Dr Liam Fox’s bill is how few people with lived experience were included in its development. I applaud the Scottish Government for taking an alternative approach, one that champions the voices of the community. Given the Scottish Government’s more inclusive approach that embraces the rights of people with all learning disabilities, it will be crucially important to recognise and explicitly identify people with Down’s syndrome within the definition of learning disability as set out in the learning disability bill in Scotland.

Those new pillars and provisions build on work that is already under way in Scotland to bring about lasting change for people with Down’s syndrome and their families and carers. Eddie McConnell, the chief executive of Down’s Syndrome Scotland, believes that we are opening a new chapter with the learning disability bill in Scotland and I wholeheartedly agree with that. I hope that the Down Syndrome Bill also heralds a new chapter in the UK Government’s approach and thinking that is far more centred on lived experience. As I said earlier, nothing about us without us.

17:38  

I thank Jeremy Balfour for securing this debate on the Down Syndrome Bill, which has passed its stages in the House of Commons and the House of Lords.

As the motion states, Dr Fox’s bill received cross-party support across the house and has moved through its stages, allowing for important debate and discussion about the human rights of people who have Down’s syndrome and their families and carers. That is what is important tonight. I do not want to get bogged down in a constitutional debate; I want to talk about the important lived experience of the people we are talking about.

My Welsh Labour colleague in the House of Commons, Ruth Jones, spoke very powerfully at the bill’s second reading about her experiences as a paediatric physiotherapist and, in particular, about the work that she did in supporting children and young people. I believe that that was perhaps the first time that many of the issues experienced by those people and their families were heard in the United Kingdom Parliament, so it was crucially important.

Although the provisions of the bill relate to England, they have been welcomed by charities in Scotland. Eddie McConnell of Down’s Syndrome Scotland, who we heard about from the previous speaker, said that

“The Down Syndrome Bill has the potential to be a landmark moment in advancing the rights of people with Down’s syndrome.”

He went on to point to the important collaborative work already being done in Scotland to move forward the rights of people who have Down’s syndrome and other learning disabilities. I am proud to have already played a small part in that journey in my working life prior to becoming an MSP and I hope to continue that work in the Parliament.

The Down Syndrome Bill seeks to remind public bodies of their duties and gives legal weight to the rights of people and their families who are fighting to get the support that they need. That is so important for many people who describe trying to access the right support and services as a daily battle.

As I have said, although the bill has been broadly welcomed in England and by organisations in Scotland, it is fair to say that there have been some divergent views on how the far the bill has gone and the fact that it could have gone further. Mencap has said that it would have done things a bit differently had it been more involved at an earlier stage in the development of the bill. For example, it would have made the bill apply to everyone who has a learning disability and framed it in the language of a social rather than a medical model, going to greater lengths to engage more people with lived experience. However, rather than oppose the progress that bill represents, Mencap has acknowledged that it has looked optimistically at what the bill could lead to in the future in England. To be honest, I think that that is where we find ourselves in Scotland—with a very clear opportunity.

I have already alluded to my previous work. When at Enable Scotland, I had the great honour of working with people who have a learning disability, their families and carers, and organisations such as Scottish Autism and the National Autistic Society, to secure cross-party commitment to a learning disability, autism and neurodiversity bill, with the introduction of a commissioner to advocate, support and protect the rights of people across Scotland. I know that the current minister, along with Jeremy Balfour and colleagues across the chamber, share our passion and concern so that we get that right, working with people across the country, listening to what they need and delivering both that bill and a commissioner with a robust set of powers to make a real difference.

Now that I am a member of this Parliament, as convener of the cross-party group on learning disability, I will seek to act as a bridge between the many people who have a learning disability and the Parliament as we work to deliver a bill that will deliver for them. The work of Dr Liam Fox through the Down Syndrome Bill is an important start and we can draw inspiration from it, but I believe that we can and must do more for people across Scotland who have Down’s syndrome, other learning disabilities and autism. I look forward to doing that work, which must be done at pace because we do not want to be left behind and we do not want to leave behind the people who need such a bill. I look forward to the work, the discussion and the debates that we will have across the Parliament and our country. We will want to undertake to ensure that the voices of those who, all too often, are not heard in the Parliament are indeed heard.

17:42  

I thank Jeremy Balfour, my good friend, for bringing this important debate today. I also pay tribute to Dr Liam Fox, our Conservative colleague in Scotland’s other Parliament, for the excellent work that he and colleagues across all parties in the House of Commons have done in bringing the Down Syndrome Bill through all its various stages and into legislation.

When I think about the issue that we are debating today, uppermost in my mind is a firm friend of our family, a young lady—not so young now, when I think about it—by the name of Joy. She is not that much younger than me, truthfully, but we have watched her over the decades and seen how her mother has devotedly looked after her and met her needs. Frankly, the whole of her life and her mother’s life are an inspiration to my family. I do not think than anyone could be more appropriately named than Joy, because joy and love—a kind of pure love that is very rare—are exactly what she exudes. I can say in all honesty that her life has touched and is touching ours for the good.

One of the great strengths of the devolution settlement is that Parliaments around the UK can learn from one another and push one another on. I remember well when the smoking ban was first introduced. The Scottish Parliament took a lead on that issue and very quickly the rest of the UK followed. Now the UK Parliament has taken the lead in championing and enhancing the rights of people with Down’s syndrome. We in this chamber, and those in the chambers in Cardiff and Belfast, should be passing identical legislation to ensure that everyone with Down’s syndrome, regardless of where they live in the United Kingdom, has access to equal rights.

I am saddened by the approach that the Scottish Government has taken to Dr Fox’s bill and the new law. Families that have a child with Down’s syndrome find themselves fighting on several fronts to get the quality of care and support that they should already have the right to. Parents are fighting ever-increasing NHS waiting lists and fighting for their child’s case to be regarded as sufficiently urgent. In the school system, parents constantly seek additional support for a child with a learning disability. In our care system, parents look at the increasing pressure and worry about how their child will cope in that system when they are no longer there to provide support. Dr Fox’s bill makes it a priority for the UK Government to address those issues directly, and we should be making identical law in Scotland, so that we make that a priority for the Scottish Government and all levels of government in Scotland.

The new law also enhances parliamentary accountability. Rather than simply granting the minister power to issue guidance to local authorities, the Down Syndrome Bill ensures that guidance is laid before Parliament. That allows Parliament to scrutinise the guidance in real time and determine how it is working and whether it can be improved. It also requires health boards to have a named individual responsible for the application of the legislation, with the result that parents and families will know who is directly responsible for that. That is another positive step in improving transparency and accountability within our health service.

I was saddened when I talked to Jeremy Balfour and heard about the response that he received from the Government to his advances that identical legislation should be introduced as it stands in this Parliament. I am afraid that sometimes one is left with the conclusion that the Government simply looks at everything—even the championing of disability rights—through the prism of the constitutional debate. Even with a bill that enhances the rights of those with Down’s syndrome, the SNP is refusing to budge from its set and repetitive narrative of “Westminster bad”. These constitutional games by the SNP and Greens will see Scotland being left behind the rest of the UK when it comes to protecting and enhancing the rights of people with Down’s syndrome.

I urge the Scottish Government to grow up, follow the example set by the UK Parliament and implement identical legislation to empower those with Down’s syndrome in Scotland, recognising their right to respect, independence and dignity.

17:46  

I thank all colleagues who have contributed to the debate. I am very pleased that it has enabled us to discuss folk with Down’s syndrome and to move forward the discussion to include discussion of learning disability, autism and neurodiversity.

I want to start by saying that I will certainly not be playing any constitutional games when it comes to bettering the lives of folk with learning disabilities, autism or neurodiversity. That is not what I am about, and I am a bit sad that accusations have been made about the playing of constitutional games.

Stephen Kerr asked why we do not have identical legislation. The reason for that is quite simply that we want better legislation. As Mr O’Kane pointed out in his speech, there has been criticism of Liam Fox’s bill because it is not as inclusive as it should be and the voices of lived experience have not been listened to as much as they should have been. I agree completely with Mr O’Kane that this is an area where we should be looking at a social rather than a medical model. I commit to continuing to listen to the voices of lived experience as we move forward, and I give a commitment here and now to work in tandem with the cross-party group on learning disability, where the voices of lived experience are heard, as they are in other places. I hope that we can work across the Parliament to get this absolutely right.

The minister will know that I propose to introduce a consultation on a disability commissioner for all disabilities in the next couple of weeks. In principle, is the Government supportive of a disability commissioner who would cover not just a certain area, but all disabilities? Will the Government support my consultation document?

I have not seen Mr Balfour’s consultation document. We will look at what responses come back. As Mr O’Kane pointed out, there was cross-party agreement that a learning disability, autism and neurodiversity bill should be introduced in the Parliament—I think that that was in all the manifestos—and the Government will keep to that commitment.

Will the minister take a further intervention?

I would like to make some progress first.

The Scottish Government is pleased to see the UK Government’s commitment to the Down Syndrome Bill. We recognise that people with Down’s syndrome face a range of challenges at all stages of life, and it is encouraging that the UK Government is exploring how best to meet the needs of individuals. The Scottish Government shares the ambition to improve opportunities, outcomes and support for people with Down’s syndrome, and we will continue to do that.

We are aware of the calls to extend the application of the bill to Scotland. However, our position is that we take a wider view of Down’s syndrome and view it in the context of the rights of all people with learning disabilities. The value of such an approach was highlighted by Baroness Sal Brinton during the bill’s third reading in the House of Lords on 1 April. She stated:

“if the Bill had the powers which its promoters suggest, there risks being a hierarchy of learning disability. This has already caused a split between families with learning disability, all of whom still need to fight for the limited resources to which the law says they are entitled.”—[Official Report, House of Lords, 1 April 2022; Vol 820, c 1789.]

In Scotland, we have always taken a wider view, whereby people with Down’s syndrome are included in current policy work on learning disabilities through “The keys to life” framework, the “Learning/Intellectual Disability and Autism: Towards Transformation” plan and our work on the learning disability, autism and neurodiversity bill. I will return to some of those points later.

I will take an intervention from—

Jackson Carlaw.

I knew that I was gone, Presiding Officer, but I did not know that I was forgotten.

I have known Liam Fox for more than 40 years and I am quite sure that everything he has done in relation to the bill has been completely sincere, but I also think that the minister is a man of his word. I have listened with care to the argument that he has put to the chamber this afternoon. My concern is with the constituents and the people I know who have Down’s syndrome and have carried it throughout their lives.

Can the minister give an assurance that the protections that he expects to emerge from this process for people with Down’s syndrome, which he has aligned with other conditions, will be no less robust—indeed, will be more robust—than those for people with other conditions, and that he anticipates and expects the learning disability, autism and neurodiversity bill to be forthcoming and to deliver timeously for people with Down’s syndrome? I think that such an assurance would be very welcome.

Minister, I can give you the time back for both interventions.

Thank you very much, Presiding Officer.

I have not been critical of Dr Fox’s bill, but I think that we can go much further and can do better by listening to the voices of lived experience. We are delighted that Down’s Syndrome Scotland has been very supportive of our work, led by Eddie McConnell, as has been mentioned earlier, who has done a huge amount for people with Down’s syndrome in Scotland. I assure Mr Carlaw that we will do our level best. I will be held accountable not just by this chamber but by the likes of Eddie McConnell and Down’s Syndrome Scotland. We intend to get this right for people as we move forward.

Will the minister take an intervention?

Will I get the time back?

You will, minister.

Okay, I will take the intervention.

I am grateful to the minister. I appreciate that he has not seen my consultation on a disability commissioner, but he will recognise that the disability community, which covers physical, mental and other conditions, has been deeply affected through Covid. In principle, without committing to every detail of my proposal, is the Scottish Government in favour of a commissioner not just for neurodiversity and Down’s syndrome but for all disabilities, whatever they are?

I will have a look at Mr Balfour’s consultation and the responses to it, but what I am speaking about today and what we are discussing today is Down’s syndrome. I give a commitment here and now, as was in our manifesto and in the manifestos of many other parties, that there will be a learning disability, autism and neurodiversity bill during the current session of Parliament, which will ensure that the rights of people with Down’s syndrome, among others, are respected and protected in law. To help to make sure that the new legislation is championed when it is implemented, we plan to create a learning disability, autism and neurodiversity commissioner through that new law.

The Government committed to that bill when the First Minister announced it in the Scottish Government’s programme for government on 7 September, and we are currently pursuing it to provide and improve support for people with Down’s syndrome and other learning disabilities. The Government has set out its commitment to people with a learning disability, including those with Down’s syndrome, and their families through the 2013 keys to life learning disability strategy and the implementation framework, which was refreshed in 2019.

Will the minister take an intervention?

I need to make progress—unless I can get the time back.

You can, but I ask Mr Balfour to be brief.

I promise that I will be brief and that this will be my final intervention. I seek clarification. Does the minister expect the bill that he is talking about to be introduced in September of this year or will it be after that? What dates are we looking at?

I am not going to give a timeline for the bill, because we have to listen to the voices of lived experience in order to get it right. It will not be me but the voices of lived experience who will set a timeline for the bill. We know that there are polarised views on some issues. We must iron all of that out and get this right for folk right across Scotland. I am not going to be pushed on the timeline, because we need to continue to have conversations.

I mentioned “The keys to life” implementation framework. In addition, we published the “Towards Transformation” plan in March 2021. It looks at the actions that are needed to shape support, services and attitudes to ensure that the human rights of autistic people and people with learning disabilities, including those with Down’s syndrome, are respected and protected. They must be empowered to live their lives in the same way as everyone else. The actions in the plan cover all aspects of life.

To address heath inequalities, the Government has commissioned the Scottish Learning Disabilities Observatory to undertake research on health outcomes for people with learning disabilities, including people with Down’s syndrome. In addition, we are exploring a national roll-out of annual health checks for people with learning disabilities. We are currently finalising the review of supported employment and implementing the action plan on the recommendations of the additional support for learning review. The Scottish Government also provides funding to Down’s Syndrome Scotland to support people with Down’s syndrome and their families. That includes family support, speech and language support for children and peer support for adults.

In summary, the Scottish Government welcomes the UK Government’s support for the Down Syndrome Bill, and we will strive to support the needs of people with Down’s syndrome, their families and people with learning disabilities more broadly, including via the learning disability, autism and neurodiversity bill. We want the rights of people with Down’s syndrome and all people with learning disabilities to be respected and protected. That is what I will strive to do. I hope that we can do that with cross-party support—I hope that that will be the case as we move forward—but I am sure that we all share the view that we need to do our best for people with learning disabilities, autism and neurodiversity in our country. That will take a fair amount of work as we move forward, but I am absolutely adamant that we must get the learning disability, autism and neurodiversity bill right.

Meeting closed at 17:58.