Down Syndrome Bill

Gillian Keegan Excerpts

3rd reading
Friday 4th February 2022 Commons Chamber

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

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 (Banff and Buchan) (Con)]

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]

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]

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]

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.