Down Syndrome Bill

(Limited Text - Ministerial Extracts only)

Committee stage
Wednesday 26th January 2022 Public Bill Committees

[Karin Smyth (Bristol South) (Lab)]

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.

[The Minister for Care and Mental Health (Gillian Keegan)]

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.

[Dr Fox]

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]

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.

[Sir Robert Goodwill]

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]

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.

[Dr Cameron]

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]

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.

[Dr Fox]

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.