All 4 contributions to the Down Syndrome Act 2022 (Ministerial Extracts Only)

Read Full Bill Debate Texts

Wed 26th Jan 2022
Fri 4th Feb 2022
Down Syndrome Bill
Commons Chamber

3rd reading & 3rd reading
Fri 18th Mar 2022
Down Syndrome Bill
Lords Chamber

2nd reading & 2nd reading
Fri 1st Apr 2022
Down Syndrome Bill
Lords Chamber

3rd reading & 3rd reading

Down Syndrome Bill

(Limited Text - Ministerial Extracts only)

Read Full debate
Committee stage
Wednesday 26th January 2022

(2 years, 3 months ago)

Public Bill Committees
Down Syndrome Act 2022 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)

This text is a record of ministerial contributions to a debate held as part of the Down Syndrome Act 2022 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

Karin Smyth Portrait Karin Smyth (Bristol South) (Lab)
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I congratulate my neighbour, the right hon. Member for North Somerset, on his work and on bringing together so many colleagues across the House. Everyone has worked enormously hard on this Bill. I thank the Minister for her co-operation. We should have more poachers turn game keepers—they are all terribly welcome.

As Members have said, the families of the 40,000 people with Down syndrome are all watching and listening to the debate carefully. As my hon. Friend the Member for Nottingham North (Alex Norris) previously said, we take every opportunity to remove all the barriers and to tackle stigma and the poverty of ambition that hold back progress in this area. The Bill is the perfect opportunity to do that, particularly around housing, mental health provision and education—all key areas that can really improve and empower those with Down syndrome across the country.

I welcome the Bill and the amendments. As the Minister said in the last debate, the Government recognise that the legal duties and frameworks are already in place. The duty under the Care Act 2014 is to assess people based on need and not diagnostic categories. It is vital that every person’s needs are met to ensure that they can fulfil their potential in their lives. This Bill is about people, not a condition; as it is implemented, we need to recognise that every individual will have their own specific needs. Social care is facing unprecedented strain, so new responsibilities must come with an assessment of investment.

I welcome the Department’s commitment that new guidance will be formed in consultation with partners, and a new burdens assessment will be undertaken ahead of that guidance. As you know, Ms Elliott, having chaired some of the sittings, I spent six weeks in Committee on the Health and Care Bill throughout the autumn. The provisions about having a named accountable person on the integrated care system and the guidance are very important and welcome developments. If the Government could learn from this Bill and take that approach more widely to the current legislation and other legislation, that would be not only good practice but very welcome for Members of Parliament and our constituents.

Our constituents expect us to see guidance and perhaps be part of scrutinising it, raising objections and problems and improving it—that is the role of a Member of Parliament—before that guidance is developed by organisations that are not accountable in the same way and imposed on our constituents. Bringing that circle back, so that Parliament has a greater role in the guidance, is really a very important step, and I hope that that starts to permeate not only the Department of Health and Social Care but other Departments and, indeed, current legislation.

I very much commend the right hon. Member for North Somerset for introducing amendments 1 and 2. They will be landmark—really important. I commend the Minister for working with the right hon. Gentleman to agree to them, and I thank everybody involved in the Bill. I agree with the right hon. Gentleman: this is an example of how Parliament and the proper role of Members of Parliament can be made real. That is only for the good of our constituents.

Gillian Keegan Portrait The Minister for Care and Mental Health (Gillian Keegan)
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It is an absolute pleasure to serve under your chairmanship, Ms Elliott; I think it is the first time. I am delighted that the Bill has received the same endorsement today from across parties as it did on Second Reading. What can I say? My right hon. Friend the Member for North Somerset has really set an example to all of us. I guess that is the voice of experience—30 years in various roles around this place, which have enabled him to optimise and maximise the situation and to get all colleagues rowing in the same direction. It is very important for a Member to do that if they are to get their private Member’s Bill into legislation; as we know, that is not typical.

Some 47,000 people in the UK have Down syndrome. It cannot be right that people with Down syndrome and their families should have to fight for access to appropriate services. I have seen this personally, as my right hon. Friend mentioned, with my nephew Joseph Gibson. Although Joseph is now happy and thriving—he is 15 now —it has not always been easy for my brother Marcus and sister-in-law Sara to secure the support that they need and that meets his needs.

That is what we want to change through clause 1, which provides that relevant authorities will be issued with guidance that they will implement locally. The guidance will enable those authorities to understand the needs of people with Down syndrome and how best to meet them. Of course, we will consult widely on the development of the guidance.

Once the guidance is published, the Government will keep it under regular review and update it periodically to ensure that it remains fit for purpose. It is very important that, when going through the clauses of the Bill, we put the right things in place, and that we do that with wide consultation. I thank my right hon. Friend for tabling the amendment to require the Government to lay the guidance before Parliament upon publication, because people here have a lot of experience and a lot to give. I am pleased to support amendment 1, which will bring this important guidance to the attention of Parliament once it has been published.

Liam Fox Portrait Dr Fox
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As well as the issue of other conditions, employment and employment law were raised a great deal by the public, although we did not address those issues in the Bill because of the complexity that they would bring. Will the guidance given by the Secretary of State include employment issues, so that those issues can be addressed without requiring further legislation?

Gillian Keegan Portrait Gillian Keegan
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First, I will deal with rare genetic disorders other than Down syndrome. We recognise that people with genetic conditions other than Down syndrome may experience problems similar to those of people with Down syndrome, so we will consider the overlaps and linkages between such conditions and Down syndrome through consultation on the development of the guidance. I will go on to address employment.

I commit that the Secretary of State will ensure through statutory guidance that the integrated care boards will have a named lead for overseeing the implementation of the guidance issued under the Bill. That named lead will ensure that Down syndrome statutory guidance is implemented and considered throughout the commissioning decisions of an integrated care board. That will play an important role in ensuring that there is accountability for improvements at the local level and that the intentions behind the Bill are fully raised across Government.

Robert Goodwill Portrait Sir Robert Goodwill
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Does the Minister accept that while many Down syndrome sufferers can get into the workplace and make a real contribution, there are others who are very profoundly affected—who cannot communicate and have great behavioural problems? I know that from experience with my wife’s family. These are not the Down syndrome sufferers who we see in the media; these are people who often have to be kept in a controlled environment with 24-hour care.

Gillian Keegan Portrait Gillian Keegan
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Down syndrome is a condition that has a very wide spectrum of abilities, as many conditions do—and as we all do, as people. Of course, the right support has to be provided for a whole range of different capabilities. We were talking about a particular case, and how important it is to get early access to speech therapy and to hearing aids so that people can develop language. It is very important to be able to maximise life chances.

Employment will differ for different people. The Government offer a range of programmes to support people with disabilities—learning or physical—to get into and stay in employment. All those programmes can also help people with Down syndrome. This includes the work and health programme and intensive personalised employment support programme, which offer personalised help and support for people with learning disabilities to get into work. The Bill creates the foundations to ensure that people with Down syndrome stay well, receive the right education, secure the appropriate living arrangements—the hon. Member for Bristol South mentioned the importance of the right support around housing—and receive support to transition into employment.

I feel proud that we can already see in our society that people with Down syndrome can secure meaningful employment. That is really important to their life, structure and self-esteem—as it is to all of us here today. We will continue to explore any steps required to make sure that people with Down syndrome can find work, where it is right for them and where that is part of their life’s journey. I expect to return to this issue in the development of the statutory guidance.

I would like to give a few examples, because all of us have met many people and seen the range of capabilities. Dilesh, who my team have spoken with, lives in Barnet with his family. He said he felt total inclusion at school, which was fundamental in providing him with the skills to secure a supported internship as a Project Search ambassador. Dilesh continued this role on a temporary basis and is working closely with his local jobcentre to find another job he enjoys. His mum believes the jobcentre has gone above and beyond to support him to reach his full potential.

We can also see big strides in representation that inspires people with Down syndrome to seek employment that truly matters to them. George Webster joined the BBC at 21 as the broadcaster’s first ever children’s presenter with Down syndrome. Ellie Goldstein, who has been a model since she was 15, has recently been in big campaigns for Gucci and Vogue while also studying performing arts.

On a world stage, George and Ellie are making big strides for representation and inspiring children, young people—not just with Down syndrome but with learning disabilities in general—and adults everywhere. Of course, we must also mention Tommy Jessop, who was very much part of a fantastic show that we have all enjoyed, and of this Bill as well. There are many role models now, and it is fantastic that they are being celebrated and seen much more in roles on our TV screens and in the media.

Lisa Cameron Portrait Dr Cameron
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The Minister is making some extremely important points. Would she agree with me that it is very important that as many hon. Members as possible also engage in the disability confidence scheme in the workplace, to help employ and offer work-experience placements to people with disabilities in their constituency offices? Is it not also important that Members consider supporting the Speaker’s disability internship programme, which has been very successful in this House?

Gillian Keegan Portrait Gillian Keegan
- Hansard - - - Excerpts

As one of the Ministers who is a disability champion, I completely agree. It is only when one tries to take a view from the perspective of someone who has some kind of disability that it becomes possible to understand how difficult it is to do many daily things. Whether it is people with physical or learning disabilities, the more that we understand their perspective the more we can accommodate them. That, of course, makes a massive difference for somebody who has more to deal with on a daily basis than perhaps we do. It is important that we all take up the training that we are offered.

I thank my right hon. Friend for tabling amendment 3, which updates the long title of the Bill. I agree with those proposals. As outlined, this guidance only applies to England, as healthcare, education and housing are all devolved matters. I know there is also firm commitment from my counterparts to improve the outcomes for people with Down syndrome in Scotland, Wales and Northern Ireland, including through legislation. I look forward to working collaboratively with the devolved Administrations on this matter.

Regarding the schedule, it is important to have clarity within the Bill about who the relevant authorities are, and what functions the guidance will apply to. The list of authorities and their functions has been drawn from existing legislation, such as the Care Act 2014, the Children and Families Act 2014 and the Housing Act 2004. For that reason, the Government support the schedule.

This Bill is hugely significant. It will improve the lives of people with Down syndrome, improve their prospects and improve their families’ lives. I am proud to support it on behalf of the Government as it progresses through Parliament. I thank all the hon. Members for their support. To be in this privileged position, and to be able to use that privilege to make a massive difference to people, is probably what brought most of us here. I thank everybody for their support of the Bill.

Liam Fox Portrait Dr Fox
- Hansard - - - Excerpts

One question that was often asked before Second Reading, and continues to be asked, is: “Why Down syndrome?” Many have written to all members of the Committee, I imagine, saying, “Why pick a particular condition? Why not simply have it lumped in with learning difficulties?” The point is that those with Down syndrome and their families know that it is much more than “just” another learning difficulty.

There is the addition of complex health conditions—very complex, in many cases. The changes in demographics, which we discussed on Second Reading—for the first time, many of those with Down syndrome will outlive their parents—bring an element of the importance of care into the equation. Rather than singling out a single grouping, we have shown the increasingly complex needs that a range of different conditions will require, as medical science improves and we have greater life expectancy, which is something we should celebrate, as a society.

The point has been made, as it was on Second Reading, that this Bill is not about a condition, but about people—people who have a particular condition, their families, and the people who care for them. We are talking about individuals who, I believe, have for too long been more vulnerable than they need to be, and were overlooked by a series of pieces of legislation, which did not adequately take into account the combination of needs that they uniquely have.

We all come to this Bill from our personal experiences. As I said in the Chamber, my personal experience is through growing up next door to someone with Down syndrome, from working with people with Down syndrome and, as a doctor, coming into contact with a lot of them. I would like to say a couple of things about what this Bill is not. First, it is not a UK Bill; we purposely took that decision very early on. We could have made it a United Kingdom piece of legislation, and effectively confronted the Welsh, Scottish and Northern Ireland Governments, saying, “You must give us the legislative consent.” That would not have been in the interest of people with Down syndrome. It would have made it a constitutional Bill, with the arguments becoming about constitutional propriety and not about those who are actually involved.

I hope that, with the House of Commons taking this decision, we will see legislation from the devolved parts of the UK giving equal rights to those who live under those devolved systems. It should not matter where someone lives in the United Kingdom; they should have access to the same quality services, the same representation, and the same parliamentary remedies as anybody else. That is why the Bill was designed as it has been.

Down Syndrome Bill

(Limited Text - Ministerial Extracts only)

Read Full debate
3rd reading
Friday 4th February 2022

(2 years, 3 months ago)

Commons Chamber
Down Syndrome Act 2022 Read Hansard Text Watch Debate Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)

This text is a record of ministerial contributions to a debate held as part of the Down Syndrome Act 2022 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

Gillian Keegan Portrait The Minister for Care and Mental Health (Gillian Keegan)
- View Speech - Hansard - - - Excerpts

I start by congratulating my right hon. Friend the Member for North Somerset (Dr Fox). It has been a pleasure to work with him, the Bill Committee and all the other teams. He has done outstanding work in introducing the Bill and navigating it through its Commons stages. I personally have learned a lot from him.

This is truly a groundbreaking Bill that will make a real difference to the lives of people with Down syndrome across the country. It highlights the hugely important role of private Member’s Bills and what can be achieved when MPs from across all parties work together. I extend my personal thanks to the Bill’s sponsors, all Members who have been instrumental in getting us this far and everybody who has spoken today and brought to life why this matters. It has been wonderful to hear the stories of Mark, Rhys and his mum Alice—the Shakin’ Stevens fan—and Asher and the beginning of his journey. Hopefully this Bill will help Asher’s parents to avoid some of the struggles that other families have been through. It is so positive to see such unanimous support for this Bill, which has been a joy throughout its passage.

I thank all the members of the all-party parliamentary group on Down syndrome, of which the hon. Members for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) and for Enfield North (Feryal Clark) are the chair and vice-chair. They have campaigned for equal access and service provision for people with Down syndrome, and they have supported the Bill’s passage.

I especially thank the people with Down syndrome, many of whom are in the Public Gallery with their families, and the representative organisations that have campaigned tirelessly on improved support for the 47,000 people across the UK with Down syndrome. I also thank my constituents who have written to me and the many families I have met at the Apuldram centre and at Aldingbourne in my Chichester constituency. It has been great to share their journeys and hear their stories.

I feel really fortunate to be the responsible Minister when this Bill is before Parliament. I support the Bill wholeheartedly. It will be instrumental in improving the lives of people with Down syndrome by tackling inequalities in access to services. It is not right that such disparities exist, and I have seen at first hand in my own family the challenges that people with Down syndrome can face in accessing the support they need.

On Second Reading and in Committee, I spoke about my family’s experience. Although my nephew Joseph is thriving, and his school, St John’s School in Chigwell, is helping him to thrive, there is no doubt that there have been challenges along the way. I have watched my sister-in-law, Sara—I know she is watching me now—and my brother Marcus battle for the support that Joseph needs.

I want everyone to get the right support at the right time and in a way that works for them. That is why this Bill, for the first time, will require the Government to publish guidance on how authorities should meet the specific needs of people with Down syndrome.

David Duguid Portrait David Duguid (Banff and Buchan) (Con)
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I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on introducing this Bill, which has huge support across the House. Does the Minister agree that, when the Bill passes, it will be an example for the communities that suffer from other genetic and chromosomal disorders and learning disabilities? They might not be as common or as well known as Down syndrome, but they are no less impactful on those families.

Gillian Keegan Portrait Gillian Keegan
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My hon. Friend makes a very good point, which has been raised by my hon. Friend the Member for Stourbridge (Suzanne Webb) and my right hon. Friend the Member for Scarborough and Whitby (Sir Robert Goodwill), who have previously mentioned specific genetic conditions. We will definitely consider overlaps and linkages between these conditions and Down syndrome through the consultation on the development of the guidance. Even though, as has been stressed many times, this Bill is specifically drafted to increase its chances of being passed, many groups will benefit from the work to develop this guidance.

I also thank my right hon. Friend the Member for North Somerset for the two amendments he tabled in Committee to ensure that the guidance is laid before Parliament on publication and to amend the Bill’s long title. I was pleased to accept both amendments on behalf of the Government. Laying the guidance in Parliament, as my very experienced right hon. Friend explained, will ensure it has the proper scrutiny.

I also thank my right hon. Friend, other hon. Members and stakeholders for providing invaluable feedback, on Second Reading and in Committee, on ensuring the implementation of the guidance in practice. Of course, the guidance must be acted upon for us to see real change for people with Down syndrome. That is why we have committed to having a named lead on integrated care boards who will be responsible for the implementation of the guidance in practice. The named lead will ensure that the right services are in place at local level and that people with Down syndrome are able to access those services. That will be a much-needed voice. We are determined that the guidance will be implemented fully and as intended at local level. This will lead to tangible improvements in the lives of people with Down syndrome, and I am personally very committed to that.

At the heart of the Bill is guidance for the relevant authorities—local authorities, and education and health authorities. I am clear that to ensure that the guidance is fit for purpose, we will consult widely and in an open and inclusive way. We will seek views from people with Down syndrome and their families, from the voluntary sector and from others who support people with Down syndrome to ensure that it reflects their needs and experience. We will work with stakeholders to ensure that the guidance remains fit for purpose. This is a real opportunity, and we do not intend to miss any aspect of it.

Once the guidance is published, the Government will keep it under regular review and update it periodically. As I said, we also recognise that people with genetic or chromosomal conditions other than Down syndrome may experience similar problems to people with Down syndrome, so we will definitely look at that and consider how the guidance can help some of those groups more broadly during the process.

I know from the debates during the passage of the Bill that employment is a really important consideration, on which we have not done well enough to date. We will continue to explore any steps required to make sure that people with Down syndrome who want to work can find work that is right for them. Fundamentally, we must make sure that people with Down syndrome maintain good health and receive the right education to support their transition into work. The Bill is an important and meaningful way of achieving that aim. It will provide those lasting foundations for people with Down syndrome to be successful.

Additionally, we are delivering a wide range of employment initiatives, such as dedicated disability employment advisers at our Jobcentre Plus sites. All these schemes, including the Access to Work fund and so on, will help to ensure that people with a learning disability have better opportunities in the workplace. Again, that is something that I am personally committed to.

Lia Nici Portrait Lia Nici
- Hansard - - - Excerpts

I thank my hon. Friend for the plans that are being put in place, but are there plans to ensure that people who work in the Department for Work and Pensions have the relevant training to understand the specific needs of people with Down syndrome and to help get them into work?

Gillian Keegan Portrait Gillian Keegan
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I regularly meet the Minister for Disabled People and the Minister for Employment—the three of us are often together—to talk about how we can optimise opportunities for many people across our society, but particularly those with learning disabilities. The numbers are not good enough, and we know that we have more work to do. As I said in Committee, I will return to the issue of employment in developing the Down syndrome statutory guidance. We know that good work helps people to live happier, healthier and more independent lives.

On scope, as healthcare, education and housing are devolved matters, the Bill and guidance will cover England only. However, I know that there is real commitment to improving outcomes for people with Down syndrome across the whole of the United Kingdom, and I look forward to working with my counterparts in the devolved Administrations as we develop the guidance so that we can ensure that there is consistency of approach and inclusion for people with Down syndrome across the whole of the UK.

It has been a pleasure to work with my right hon. Friend the Member for North Somerset in supporting the Bill on behalf of everybody with Down syndrome and their families, including my own. Its passage so far represents the very best of the parliamentary process, with MPs working together cross-party for a common purpose. I very much look forward to the Bill’s successful passage through the Lords, which Lord Kamall will oversee. He will have heard the pleas from many Members about timing, to try to coincide with World Down Syndrome Day on 21 March. I commend the Bill to the House.

Down Syndrome Bill

(Limited Text - Ministerial Extracts only)

Read Full debate
2nd reading
Friday 18th March 2022

(2 years, 2 months ago)

Lords Chamber
Down Syndrome Act 2022 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)

This text is a record of ministerial contributions to a debate held as part of the Down Syndrome Act 2022 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

Lord Kamall Portrait The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)
- Hansard - - - Excerpts

My Lords, I thank my friend, the right honourable Member for North Somerset, Liam Fox, who was here earlier; I thank the noble Baroness, Lady Hollins, for introducing the Bill in this place; and I thank all noble Lords for their contributions today.

Many who have spoken today have talked about their experiences of their own contact with people with Down’s syndrome. When I was a child growing up in Edmonton in north London, there were a couple of children in our neighbourhood who I sometimes used to play with who had Down’s syndrome. It is interesting to note that the words we used to describe them in those days would today be considered offensive. It is absolutely right that, as language evolves, we learn how to describe people with different conditions.

On that note, I take this opportunity to thank Rachel Ross from the National Down Syndrome Policy Group for sending me and other noble Lords the appropriate language and terminology. It is important that we get this right, and I know that there is cross-party consensus on that. If noble Lords have not received that, I have a copy in my pack and I will be happy to forward it on to them.

I want to be clear at the beginning that if there are no amendments, the Government will be able to give time to the Bill to support it. I should be clear about that from the start.

We agree on the need to improve life outcomes for people with Down’s syndrome; that case is compelling. It is very common for people with Down’s syndrome to experience compounded health risks compared to the general population. Some noble Lords have made the point that people may have more than one condition. We should be aware of the statistics: nearly half of children born with Down’s syndrome have a heart condition. People with Down’s syndrome face an increased risk of early onset dementia, and the NHS recommend regular check-ups to look for these signs from the age of 30. People with Down’s syndrome are also far more likely to experience recurring infections and become seriously unwell. This can be life threatening. Sadly, although life expectancy has increased, the risk of death for adults with Down’s syndrome can be around five times higher than for the general population. Despite this, people with Down’s syndrome are living longer. In 1983, the average person with Down’s syndrome lived to 25 years old. Life expectancy is now typically around 60 and has increased substantially in recent years.

There are existing legal frameworks in place which require health, care, education and housing authorities to consider a person’s individual needs regardless of their condition. However, there is evidence to suggest they have not always worked as intended for people with Down’s syndrome. That can be due to the lack of understanding or appreciation by commissioners and providers of services of the unique needs of people with Down’s syndrome, reducing the quality of care they receive and their overall life outcomes. For example, children with Down’s syndrome may remember and learn information in different ways from other children. This Bill is a significant opportunity to drive forward important changes, raising understanding and awareness of the needs of people with Down’s syndrome.

For the first time, legislation will require the Secretary of State to produce guidance to health, care, education and housing authorities about how to meet the needs of people with Down’s syndrome. Those authorities must consider the guidance; the relevant authorities will not be able to ignore it, and they must provide strong reasons for not following it. The practical impact of this guidance should not be understated. It will raise awareness and understanding of the needs of people with Down’s syndrome, and it will support authorities to recognise how to adapt services to meet those needs, ensuring that people with Down’s syndrome, their families and carers can get the support they need. That is why the Government support the Bill.

I recognise that there are concerns that a condition-specific Bill may be divisive. I hope that I can gently disagree, but also reassure noble Lords. This Bill is not about enhanced rights for people with Down’s syndrome; it is about making sure these identifiable and unique needs are not overlooked when planning, designing and delivering services. The Government have committed to develop the guidance through inclusive consultation with all interested parties, including some of the organisations named by noble Lords and, of course, people with Down’s syndrome and their families, those operating services and the organisations and individuals that represent people with Down’s syndrome. In the other place, as noble Lords have acknowledged, the Minister of State for Care and Mental Health made a clear commitment that in developing this guidance we will consider the links and similarities that Down’s syndrome has with other conditions. This consultation will make sure that all the available evidence and experiences can be considered to identify what support and interventions will best meet people’s needs.

We anticipate that the guidance will be published within a year of the Bill receiving Royal Assent, should it do so. At that time, Members in the other place and your Lordships will have the opportunity to scrutinise the guidance when it is laid before Parliament. Of course, people with Down’s syndrome and their families need to feel confident that this guidance will not be ignored—that it will result in action, and there will be avenues available to them if they do not believe they are receiving the appropriate care and support. There will be accountability at local level to make sure that this guidance is implemented. The Government made the commitment in the other place that statutory guidance relating to the Health and Care Bill will require ICBs to have a named person overseeing how the guidance is implemented and taken into account in practice.

I reassure your Lordships that this does not restrict the oversight to health and care authorities. ICBs are required to work with local authorities to establish integrated care partnerships, which bring together organisations to decide how to best address public health needs, including housing and education provision. The guidance will be subject to regular review to make sure that it remains current.

If noble Lords will allow me, I shall try to address some of the specific questions that were asked. It is important that I try to answer them. In response to the noble Baroness, Lady Jolly, officials are talking to stakeholders about this Bill, including the Down’s Syndrome Association and the National Down Syndrome Policy Group, to understand how it fits in and alongside wider policy on learning disability. We will keep the guidance under review and expect to update it periodically as policy and practice changes. I hope that this will be living, learning guidance, rather than just something that sits on dusty shelves for years. If we think about how our language and understanding has evolved, of course it is only right that we update that guidance as research increases and we learn more about this condition and other genetic conditions.

I am afraid that the reality is that it is difficult to say when an in-the-round look at services for people with Down’s syndrome was last done. In some ways, the fact that we cannot directly answer the question of the noble Baroness, Lady Jolly, highlights the need for this Bill and to shine a light on this issue. It is through wide consultation that we will determine the appropriate and best practice of this service for people with Down’s syndrome. I hope that noble Lords will contact me, as the Minister responsible, if they are contacted by any organisations which say that they have not been included in the consultation. I know that sometimes, noble Lords kindly apologise for writing to me, but that is my job as the Minister, and I accept that I should be held to account in this place. I hope that noble Lords, if they feel that any organisations are being ignored, will write to me.

The noble Baroness, Lady Bennett, rightly raised concerns, which we have received, regarding how this relates to abortion. For the avoidance of doubt, the Bill is limited to the needs of a person with Down’s syndrome after they are born. This means that it does not address abortion. This Bill gives authority to the Secretary of State to produce statutory guidance which will clarify existing frameworks and practices. Statutory guidance cannot be used to amend primary legislation such as the Abortion Act. By setting out in statutory guidance the steps that would be appropriate for health authorities to take when providing services and support to people with Down’s syndrome and their families, we believe there will be a wider positive impact for expectant parents who are told their unborn baby may have Down’s syndrome. However, the Bill is still about the child after they are born.

I thank my noble friend Lord Farmer for engaging with me on this issue. The Government rightly recognise that people with other conditions may experience similar problems. This is why I reiterate the commitment made by the Minister in the other place that we will consider the overlaps and linkages, as my noble friend Lady Neville-Jones said. We recognise the concern about services prioritising different groups of people in a way which is not focused on assessing people’s needs. I point out that any preference of which noble Lords may be fearful would be unlawful under the Equality Act 2010. The guidance is about making clearer the steps that could be taken to meet the unique needs of people with Down’s syndrome. This is something the guidance could emphasise strongly. We will engage and consult upon this in detail when developing the guidance.

Turning to one of the issues raised by the noble Baroness, Lady Uddin, I hear the concerns expressed about consulting with people with Down’s syndrome and other conditions. We are committed to ensuring that this guidance works, and that it evolves as we learn more. We believe that the best way of addressing this is to do it once the Bill has passed. Issues were also raised about the completion of the SEND review. Unfortunately, it has been delayed due to the pandemic. Also, the pandemic has highlighted some very real issues, and exacerbated some of them. Therefore, even though it is irritating that it has been delayed, it is only right that we take advantage of the light which has been shone upon the exacerbation of those conditions to ensure that we have appropriate guidance.

The Department for Education plan to publish proposals arising from the review of a public consultation by the end of this month. It is important to hear from a wide range of people, including the noble Baroness, Lady Uddin, given her years of experience, as well as the many organisations with which she has worked over the years. I emphasise that this is not about giving preference to people with Down’s syndrome. It is clear that to do so would be illegal under the Equality Act 2010.

In conclusion, I know that there are noble Lords who have concerns about this, and I am grateful to the noble Baroness, Lady Thornton, for her commitment that she will support the Bill. I make a plea to all noble Lords. Given, as my noble friend Lady Neville-Jones said, the time frame and the amount of legislation we trying to get through, if this Bill is amended, it may well fall.

Some of your Lordships may have read the Robert Caro biography of Lyndon B Johnson. In that book, it talks about his amazing career and at the end, one of the things it covers is the 1957 Civil Rights Act. That was criticised by a lot of people for not doing enough. Johnson’s plea to them was, “Let’s take this, bank it and build on it”. That led the way to the 1964 Civil Rights Act. Now I am not saying that I want to equate those Acts in any way with the Bill, but they are about recognising issues that ought to have a spotlight shone upon them.

I therefore make this plea to noble Lords: let us together take this step. Please let us support the noble Baroness, Lady Hollins, for all the work she has done and for the way she has pushed the Government during the Health and Care Bill and highlighted many of these issues. One of the things I find as a Minister in this place is how much I am still learning daily, about not just my portfolio of technology, innovation, life sciences and international relations but the many conditions that people have, and what more we can all do to help them. I hope that noble Lords will feel able to support the noble Baroness, Lady Hollins, and not amend the Bill, otherwise we risk not taking that first step.

Baroness Neville-Jones Portrait Baroness Neville-Jones (Con)
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My Lords, on the basis of what my noble friend the Minister has just said, is he open to further discussion on the Bill between now and Committee? I did ask, but I do not think he said whether he was ready to talk further. I think there are perhaps others in the Chamber who might be interested.

Lord Kamall Portrait Lord Kamall (Con)
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I hope the noble Baroness will not take this personally and I am sorry I forgot to answer that specific question. I am sure noble Lords will recognise that a number of questions were directed at me. I hope they will also recognise that I always try to answer as many questions as I can, and we go through Hansard to make sure that we sweep up afterwards, as it were, and write to noble Lords. I will of course be happy to have further conversations. It may be me or the relevant Minister at other times, but I am very happy to make sure that there is a Minister who will consult with the noble Baroness, and with any other noble Lords who feel that their concerns are not being heard enough; we can make that commitment.

Down Syndrome Bill

(Limited Text - Ministerial Extracts only)

Read Full debate
3rd reading
Friday 1st April 2022

(2 years, 1 month ago)

Lords Chamber
Down Syndrome Act 2022 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)

This text is a record of ministerial contributions to a debate held as part of the Down Syndrome Act 2022 passage through Parliament.

In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.

This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here

This information is provided by Parallel Parliament and does not comprise part of the offical record

Baroness Brinton Portrait Baroness Brinton (LD) [V]
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My Lords, I too want to join in congratulating the noble Baroness, Lady Hollins, on the Bill reaching the end of its legislative passage today. Her expertise and commitment to people with Down syndrome and other learning disabilities is well known and much respected—and not just in your Lordships’ House.

I rise to speak on behalf of some of the Peers who raised concerns about this Bill at Second Reading, particularly the noble Baroness, Lady Neville-Jones, and the noble Lord, Lord Farmer, who cannot be in their place today. I will start by saying what is good about this Bill. It has raised the profile of Down syndrome, which, speaking as someone with a nephew with Down syndrome, I say is a good thing and long overdue.

Your Lordships’ House will remember that eight of the 12 cross-party speakers noted that, 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. I am pleased to hear the noble Baroness, Lady Hollins, expressing her desire that the objectives of this Bill are extended to other people with genetic conditions and learning disabilities. I am sure that she and I—and others —will be looking to future government Bills to make a real difference to the lives of all people with learning disabilities.

I will not go through the details of the concerns we had before, because now is not the time. One of my great concerns is that the hopes of many families of people with Down syndrome have been raised beyond the powers in this Bill. I hope that the Minister will ensure that those aspirations are met, not just for people with Down syndrome but for the wider learning-disabled community. I wish this Bill well.

Lord Kamall Portrait The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)
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My Lords, I begin by extending my congratulations to the noble Baroness, Lady Hollins. I am grateful to the noble Baroness for steering the Bill to this point. I also extend a warm welcome to those who were in favour of this Bill, some of whom are in the Public Gallery. I offer my thanks to the right honourable Member for North Somerset, Dr Liam Fox, who introduced this Bill in the other place. I also want to thank everyone else who has been involved in developing this important piece of legislation.

I know that a number of concerns have been raised, and I welcomed the scrutiny of the Bill two weeks ago at Second Reading. The Government recognised some of the points that were made. Noble Lords raised important matters about the risk of discrimination and widening inequalities, as well as how the proposed guidance could be developed, scrutinised and implemented in a fair and inclusive way. We have listened closely to these concerns, and I hope to reassure noble Lords on a few points so they can be confident in their support of the Bill and the impact it will have at this stage.

The guidance is about making clearer what steps could be taken by relevant authorities to meet the unique needs of people with Down syndrome. The Bill does not remove the duties under the Equality Act 2010 for relevant authorities to assess all the needs of people to whom they provide support. Our assessment is that, to prioritise funding and resources for people with Down syndrome above other groups without proper assessment of people’s needs would be considered unlawful.

The Government will consult with a broad set of stakeholders in developing the guidance, including those with other conditions. I want to be clear that people with lived experience will be at the heart of this at each phase of its development. We will strongly encourage and support people with other genetic conditions, disabilities and protected characteristics, and their advocates, to engage with this process. It is right that we support legislation that will improve life outcomes, reduce inequalities and build a fairer society.

Baroness Hollins Portrait Baroness Hollins (CB)
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My Lords, I want to reassure noble Lords that I and others involved in this legislation, including seeing it through the parliamentary process, will do all we can to ensure that the process is as inclusive as possible. I know from experience that lived experience must be at the heart and soul of the creation of the guidance, and I welcome the reassurances given by the Minister here and the Minister in the other place on this. It has been a pleasure and an honour to sponsor this Down Syndrome Bill through your Lordships’ House.