Down Syndrome Bill

Gagan Mohindra Excerpts

3rd reading
Friday 4th February 2022 Commons Chamber

[Mr Gagan Mohindra (South West Hertfordshire) (Con)]

Like others, I start by congratulating my right hon. Friend the Member for North Somerset (Dr Fox) on his important work in bringing the Bill to the House and on reaching Third Reading. Like my hon. Friends the Members for Eddisbury (Edward Timpson) and for North Devon (Selaine Saxby), we all know individuals with Down syndrome. My experience is similar to that of my hon. Friend the Member for Eddisbury: when I was growing up, living in the house next door was a young lad by the name of Mark, who was the great love of his parents, Tony and Carol. It just so happened that he had this condition, Down syndrome, but that was not a barrier to the fulfilment of his life chances. Unfortunately both Tony and Carol have since passed away, but I am aware that Mark is leading a very full life. He is in work, and I believe he has his own individual accommodation, although he may require support and has a large network around him.

Our role, as legislators, is to ensure that people are able to achieve their full potential, and also to strive to give them the confidence to be ambitious. We who have been brought up in this country are very fortunate, in that the barriers to success are very limited. As a second-generation immigrant, I still pinch myself to make sure that I really am sitting on the green Benches in the House of Commons.

My previous experience as chairman of the board of governors of a further education college, and also as a governor on the board of a school for young people with autism, has shown me directly that when we do things right, we do them really right. That means being able to say to people, whatever their status or condition, “Be good, be great, and be a real world leader.”

[Ruth Edwards]

My hon. Friend is advancing an excellent argument. Can he outline some of his experience of best practice on the board of governors, and of what works and is successful?

[Mr Mohindra]

That returns me to my hon. Friend’s own earlier comment. The skills required in certain industries may not necessarily be academic. I suffer from dyslexia and have always regarded that as a superpower, although I am sure that if I had been diagnosed at an earlier age, others might have regarded it as a disability. The ability to think differently, to be a disruptor and to question the status quo, which conditions of this type may typically entail, benefits us as a society, and—here I allude to the previous role of my right hon. Friend the Member for North Somerset in defence—it makes our country even more secure than it might otherwise have been.

My right hon. Friend is an astute and successful legislator, and I am personally reassured that his Bill will have a lasting impact, but as others have said, this is the start of a process and not the end. Today we are focusing on Down syndrome, but I think it would be easy to replicate this model for the purpose of other conditions. I believe that these measures should be adopted as soon as possible, and I look forward to the fulfilment of the ambition of my right hon. Friend to complete the Bill’s passage before World Down Syndrome Day in March. I hope that the Government can provide us with some confidence that that will be the case.

The role of politicians at whatever level, whether in local or in national government, frequently involves signposting. The provision of a named individual in the integrated care system will be a game changer for the families and loved ones who may not understand the bureaucracy of whatever public service they are having to deal with. The ability of a Member of Parliament to direct a constituent to a named individual with an email or other correspondence address can only help the system and make it smoother. Our role as politicians is to reduce the barrier, to make life as easy as possible for our constituents. The Government have a proud history in this regard, given the work we have done to date. We spent £2.6 billion over the 2021 spending review period on new school places for children with special educational needs and disabilities in England, and will more than triple the current capital funding levels to over £900 million by 2024-25.

I was not going to mention this, but I will, because I think it important. I read an article in the media today about a lady called Beth Matthews. She is a young lady of 22 who has achieved in her life: her story is important because she is now a model and she also happens to have Down syndrome. For me, that is an irrelevance, but people feel the need to show her as a leading light. Similarly, there is Tommy Jessop, an actor in “Line of Duty”. It is good that we normalise people with a condition, whether hidden or obvious. I look forward to the day when they are getting named not for their disabilities but for their ability and the fact that they are a master of their art.

[Ruth Edwards]

Does my hon. Friend agree that it is important to have role models from neurodiverse conditions in all areas of life, and that that will encourage others to believe they can also fulfil their ambitions and dreams?

[Mr Mohindra]

Absolutely; my hon. Friend is on a roll with her interventions and I look forward to more of them.

When I was growing up—I am sure others will have had a similar experience—I always looked at the TV screen, the media or the newspapers and asked where the people of my ilk had got to and what they had achieved. It can only be a good thing for people to be able to see others who look or sound the same as them being world leaders or industry leaders or social activists—people who change others’ lives.

Locally to me, I want to give a shout out to DS Achieve and its teamwork across Hertfordshire. I did a bit of research—unfortunately for my right hon. Friend the Member for North Somerset I was unable to be involved in previous iterations of this Bill—and reading its website and understanding what it is doing is reassuring: it is about people achieving their potential and not being regarded as just having a disability. There is lots of work going on—my right hon. Friend commented earlier about the expected lifespan now associated with this condition, which is to be applauded—but we need to make sure that we consider not just living but quality of life. This Bill goes hand in glove with that aim, ensuring a safety net of local councils and communities so that additional support is in place if individuals feel they need it. Others have spoken about the fact that people’s needs are different: different individuals will need support at different times in their life, and not all the time, and being able to dip in and out knowing there is a named person they can go to as a one-stop shop for support is a smart idea, so I applaud my right hon. Friend for his foresight.

[Edward Timpson]

I am enjoying my hon. Friend’s speech and agree with his comments. Does he agree that in the past too often the default position for those with Down syndrome as they grew up was to envelop them in cotton wool and not give them a chance to grow and develop and demonstrate what they are capable of with the right support in place? The societal attitudinal change coupled with this Bill presents an opportunity for them to demonstrate, as we have seen on our TV screens and elsewhere in the media, that they can have a successful career and loving and meaningful relationships as long as we ensure, as we would for anybody else with a condition or difficulties in their lives, that they have the support and networks in place to be able to progress. In the past, those with Down syndrome have potentially been seen as simply to be managed, as my right hon. Friend the Member for North Somerset (Dr Fox) said in his opening speech.

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[Mr Mohindra]

My hon. Friend speaks from a position of significant knowledge and is absolutely right: the culture change both in the community and in the public bodies involved in this sector has moved on in leaps and bounds within the space of a generation, and rightly so. The message now is, “Be great at what you’re doing.” That does not necessarily mean being an excellent employee. It could mean being brilliant in a charity, brilliant at community work, or brilliant in a sport. There are so many different aspects. Success should be what a person thinks it is internally, and not what society thinks.

When I was growing up, I was very much steered towards certain careers. Admittedly, politics was not actually one of them, so in some eyes I may have failed in my life. I assure Members that I really enjoy being in this place; having spoken to colleagues across the House, I know that we all feel truly honoured to be here. I look forward to the day when, whatever disability our colleagues may have, no one bats an eyelid. There is nothing stopping that from happening. I look at some of our colleagues in this place. For example, my right hon. Friend the Member for Harlow (Robert Halfon), who is a very good friend, has not been held back by his disability.

Our role as parliamentarians is to say loudly and clearly that people’s perceived disability is not really a disability. We face so many challenges in life. Hopefully, when statesmen or community leaders say enough times, “Actually, you have very few barriers,” people will begin to believe it. I look forward to providing support in whatever small way I can.

I will wrap up now, because I know others wish to contribute to debate on this Bill. In conclusion, this Bill not only helps people with Down syndrome, but, as my right hon. Friend the Member for North Somerset has already said, sets out a framework for how we can provide services in the future for those with a range of disabilities and special needs. This is the first in what I hope will be a series of legislative measures that we can all get behind.

[Siobhan Baillie (Stroud) (Con)]

It is a pleasure to speak in this debate. I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on all of the work that he has done. I see that team Freddie and a number of friends are in the Public Gallery providing their support.

This Bill means a lot to thousands and thousands of campaigners. There are 47,000 people with Down syndrome and their families around the country. I give particular credit to the families from Stroud and Gloucestershire who have reached out to me to express their delight that this Bill has been introduced and also to explain their experiences and why it is so important. This is actually a spectacular use of a private Member’s Bill. I am also thrilled that the Minister for Care and Mental Health, my hon. Friend the Member for Chichester (Gillian Keegan), is at the Dispatch Box. We have discussed Down syndrome for many, many years, because we are both blessed with nephews with Down syndrome. Those boys give us great joy, particularly as a distraction from this mad job.

The Bill proposes, for the first time, a duty on the Secretary of State to give guidance on housing, education, youth offending and national health authorities. It also imposes a similar duty on the relevant authorities, which is very important. The guidance will set out the steps required to meet the needs of people with Down syndrome, and I sincerely believe that it will be the start—and it is the start—of many other areas of policy and work to undo some of the problems that people with Down syndrome face in their daily lives.

My nephew, Rhys, is now 19 years old. He is the light of every room he enters. He works for the Thames Valley Cleaning company at the Select Car Leasing Stadium for the Reading Royals. He is right royally unimpressed with me—I am not cool, particularly when I am in a suit on the telly, so I hope he is not watching now. Let me relate part of Rhys’s story—[Interruption.] I am sorry if I get upset. It is not just because I am pregnant; I once tried to talk about Rhys in Camden Council many years ago and cried then as well—

[Mr Mohindra]

Let me give my colleague a brief respite. I know that she is a massive fan of the Bill of my right hon. Friend the Member for North Somerset (Dr Fox) and I look to hearing further words from her.

[Siobhan Baillie]

I am blessed by having great colleagues in this Chamber.

Alice fell pregnant aged 15. As she was so young—we had no Down syndrome in our family and there is a common belief that only older, geriatric mothers as they are often referred to in maternity terms have Down syndrome children—Alice was not offered any advice. She did not have any discussions about Down syndrome. She was 15 and scared. Her family was not around her, we did not know about the pregnancy in the early stages, and I doubt that she asked any questions. It was 20 years ago, too, so there were few smartphones and limited ability to google.

When Rhys was born, Alice was immediately in love with her baby son, but a few days later, my nurse mum spotted signs of Down syndrome. Notwithstanding the absolute love that she felt for her child, it is fair to say that my sister was pretty shocked by what was happening. Remembering that she was still a child herself and all the hopes and dreams that go into a pregnancy, I have since spoken to other parents of Down syndrome children and parents of other children with disabilities—

[Mr Mohindra]

On that point, does my hon. Friend agree that we need a real focus not just on the person with Down syndrome but on the bubble around them—carers, friends and family—because they are involved in the potential ups and downs of the journey as much as the person with Down syndrome themselves?

[Siobhan Baillie]

I completely agree. I have spoken to other parents who have discovered upon their child’s birth that they have a child with a disability about their fear, and about the loss of their hopes and dreams; their belief that they would take the child to university, or to get married, is dashed. With Down syndrome in particular, people believed that the child would die aged about 30. There is such a lack of education. That was particularly the case when Rhys was born, but I think it is still true now. Thinking about the bubble—the whole family—is incredibly important, and that is hopefully what the Bill will do. So much of what we think we know when it comes to disabilities is often not true.

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[Mr Mohindra]

One thing I wanted to mention was to ensure that we realise that this affected all communities up and down the country. It is not specific to a particular geographical area or heritage. Does my hon. Friend agree that the Bill will be beneficial to all communities?

[Siobhan Baillie]

Absolutely. That is so important. When I reel off this list, if I can get through it, Members will understand why it is so important.

I have seen my little sister battle for understanding about Down syndrome. I have seen her battle for the right to medical care for operations in a timely fashion. She has battled for education. She has battled for housing. She has battled to get landlords to take people with benefits. She has battled during the transition from Rhys being a child to an adult, and she is still doing that. She has battled to get the council to complete the required assessment. She has battled with the welfare system and disability living allowance appeals. She has battled with endless application forms and then had to re-do them because they have been lost by various authorities and had to start all over again. She has battled during covid. I know that a lot of families battled really fearing for their loved ones with Down syndrome, who are vulnerable, often with respiratory issues. Covid was thrown at all of us, but we found that parents were being ignored, or certainly felt they were being ignored, and not prioritised for vaccinations. The whole family was not being prioritised for vaccinations to protect the people with Down syndrome in their homes.

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[Jo Gideon (Stoke-on-Trent Central) (Con)]

We have had some amazing contributions today. First, I obviously thank my right hon. Friend the Member for North Somerset (Dr Fox). This is an incredibly important Bill. At the beginning of the debate, he said that the narrowness of the Bill was important to getting it through as a private Member’s Bill, and I want to reflect on that.

I have my own private Member’s Bill, the Button Batteries (Safety) Bill, for exactly the same reason: when we talk about protecting the vulnerable, sometimes we have to be very specific. Following the tragic death of Harper-Lee Fanthorpe at the age of two after swallowing a button battery, I hope my Bill will protect more children by making parents, carers and others aware of the dangers. I was lobbied by others to broaden my Bill to include things such as magnets, because they are also things that young children ingest. The more vulnerable the children, the more likely they are not to recognise the dangers of things such as button batteries, so I have been campaigning long and hard on that important issue.

I recognise that it is important to focus on the key issue. In this case, that is the rights of people with Down syndrome, and my right hon. Friend the Member for North Somerset makes a very good point about life expectancy. I do not know whether Members saw “Call the Midwife”, where it looked at how Down syndrome was viewed back in the ’50s and ’60s and how far we have come in understanding and on life expectancy. It means we have to protect, as well as ensuring that there is much better preparation, I guess, for a longer life—and that preparation starts in school. As chair of the all-party parliamentary group on youth affairs, I have looked at the issues with education. Sadly, only one in four young people with Down syndrome finds themselves in mainstream education.

[Mr Mohindra]

My hon. Friend mentioned APPGs. Does she agree that the role of APPGs is important in ensuring that we have an informed debate? They give colleagues and professionals the platform to go in depth into topics, so that when we are discussing them in this place we come from a position of experience and knowledge.

[Jo Gideon]

I absolutely agree. The key thing is that APPGs by their very nature are cross-party. On issues such as those we are discussing today with this Bill—this is a cross-party topic—the more that we can find consensus, the better it is for the people we represent.

Looking at schools, the Bill asks for a curriculum tailored more towards children with Down syndrome and for more teachers to be trained to understand how to teach children with the condition and the specific learning profiles of that condition. It is a fact that Down syndrome pupils in mainstream schools achieve on average at two years above the academic level of those in special schools.

Having said that, there are some fabulous special schools, and I want to give a shout-out to Aurora Hanley School in Bucknall in my constituency. There is some wonderful work going on. I also want to mention Stoke and Staffordshire Down syndrome social group, who have posted a lot about this issue. They meet regularly at the Bridge Centre in Birches Head, and they make a difference to about 50 families. It is a massively important contribution that everybody can make.