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Down Syndrome Bill

Volume 820: debated on Friday 1 April 2022

Third Reading


Moved by

My Lords, I beg to move that the Bill do now pass. I thank all those who have worked on the Down Syndrome Bill to get it to this point, including Dr Liam Fox for drafting and steering it through the other place with cross-party support. I note that many of the Members of Parliament who spoke in that debate talked about their own constituents with Down syndrome, which is an explanation of why the Bill had quite so much support. Many members of the National Down Syndrome Policy Group are in the Public Gallery today and I extend a warm welcome to them. I thank Ministers and officials for supporting the Bill and those across the House, including the Opposition Front Benches, who have engaged in debate and, in particular, for the constructive spirit in which concerns were raised. I hope that those who had concerns have been reassured.

I believe that this Bill will increase awareness and improve access to services for people with Down syndrome. It is my hope that the Down Syndrome Act will open up a wider conversation on how to improve public services for people with other chromosomal disorders or disabilities, as well as all people living with learning disabilities. To this end, I am considering reviving my previous Private Member’s Bill, which would require the Secretary of State to undertake a public consultation to review the provision of services—including health and care, but also employment and housing—for all adults with learning disabilities. Perhaps the time is right to take things a little further and review the impact of recent and forthcoming legislative and policy developments. This includes the Down Syndrome Act, the Oliver McGowan mandatory training in learning disability and autism, the inclusion of an executive lead for learning disability and autism on integrated care boards, the planned integration of health and social care and building the right support action plan, among others.

When this Bill gains Royal Assent, in some ways, the real work begins with the process of creating the guidance. This is the time when all stakeholders will need to pull together and heal any divisions that have occurred.

My Lords, the commitment to supporting people with Down syndrome has come through loud and clear in your Lordships’ House. I pay tribute to, and congratulate, Dr Liam Fox on introducing the Bill in the other place and the noble Baroness, Lady Hollins, for steering the Bill through your Lordships’ House with her characteristic professionalism and sensitivity. We are glad to follow her lead. From these Benches, we give our support to the noble Baroness in her endeavour, through this Bill, to support the 40,000 people with Down syndrome. They and their families, friends and communities will be appreciative—as are we—of the recognition and improvements brought about through this Bill.

I know that the noble Baroness, Lady Hollins, is keenly aware of the point raised in earlier debate that, in the focus on Down syndrome, noble Lords would not want to create a hierarchy of learning disability which may inadvertently create challenges for other learning-disabled people. I very much welcome the words of the noble Baroness today in this regard. It is also welcome that the department has given a commitment that new guidance will be formed in consultation with key stakeholders. I am keenly aware that this Bill is not the end of the journey but just one step along the journey. In conclusion, I congratulate the noble Baroness, Lady Hollins, on her tireless work for those with learning disabilities, and I wish the Bill all the very best as it continues its path.

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.

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.

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.

Bill passed.