Down Syndrome Bill

Part of the debate – in the House of Commons at 12:30 pm on 4th February 2022.

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Photo of Edward Timpson Edward Timpson Conservative, Eddisbury 12:30 pm, 4th February 2022

It is a real pleasure to follow my right hon. Friend Dr Fox, who, in a more modest way than I normally remember, has established an important part of what has made this Bill possible: his energy, enthusiasm and drive to get it to this stage in this shape and at such speed.

Many of us in this House will have different personal and professional reasons for supporting this Bill. For me, I must go all the way back to the early 1980s: believe it or not, I was alive and about seven or eight years of age. My parents had started fostering a few years before, and ended up doing so for about 30 years. During that period from the early ’80s to the mid-’80s, we as a family looked after Down syndrome babies, who came to live with us for weeks and sometimes months. We also offered respite care once a month for a long weekend for a Down syndrome boy in his early teens, to give his parents a much-needed break from an incessant and stressful time. Despite the love they had for their son, they needed a pressure valve in order to maintain their ability to look after him and keep their energy levels up.

We were as happy as could be to provide that respite care. I recall it vividly, because it captured some of the most enjoyable images of our time in fostering. I recall many occasions with that young teenager, who had a couple of obsessions that infiltrated our household. The first was with the recording artist Shakin’ Stevens, who I am sure is also a favourite of all those present. That young boy was a fanatic follower of Shakin’ Stevens, and whenever he came to join us for a weekend, the first thing he would do was to put on our Shakin’ Stevens tape, and we would all dance together in the kitchen with real abandon. I remember it as an extremely happy time.

That teenager was also fixated on the wrestling on “World of Sport” with Dickie Davies on a Saturday morning. He used to sit very close to the screen, because he did not have great eyesight, but he was transfixed by the bouts that were shown. Often, an hour or so would go by and he would not have moved.

There was one scarier moment when we took him to a local swimming pool, where he was very keen to put on a mask and snorkel, go underwater and have a go at swimming. Unfortunately, it became apparent very quickly that he could not swim, so someone who was on duty had to jump in, fully clothed, and rescue him. However, the fact that he wanted to do those things and that he was given the opportunity was important, because, as my right hon. Friend said, we must ensure that the rights people with Down syndrome have are the same as for everybody else. That includes all those opportunities that we come across in our lives.

That experience has led me to want to speak to the Bill—unfortunately, I was not on the Committee—as I am extremely supportive of what it seeks to achieve. There is clearly a lot of crossover between the reforms to the special educational needs and disabilities system, which I brought forward as children’s Minister, and this private Member’s Bill. As a learning disability, the estimated 47,000 people who have Down syndrome will potentially benefit from that system.

The diagnosis will come extremely early in people’s lives, so there is no reason why an education, health and care plan cannot be put in place as early as possible. A focus on outcomes, whether educational, social or employment-related, can be built into those plans, which can go up to the age of 25. As we know, the life expectancy of those with Down syndrome has increased dramatically from the days when we were looking after Down syndrome children, so there is every reason to ensure that those outcomes are brought to fruition.

In publishing the guidance that the Bill brings in, there is an opportunity to ensure that the reforms to the special educational needs and disabilities system, particularly to the code of practice and the local offer that must be published in every local area to explain the services available for those with special educational needs and how to access them, marry up with what is already out there. That will ensure that there is a clear pathway for parents and carers to know what is available and how they can access it.

The level of support that those with Down syndrome need throughout their lives will vary considerably. It is important to remember that they are people with different individual needs, although there are certain services that they are more likely to need than others, such as speech and language therapy, physiotherapy or optician or hearing specialists. Therefore, the Bill is an opportunity to pull together the different routes to accessing key services.

It is vital, however, that those children, young people and adults with Down syndrome have a sense of agency and that they feel that those things are being done not to them but with them, so that they have a stake in their future. For example, with the increased life expectancy of those with Down syndrome and some outliving their parents, they are having to be cared for by other means. There are recent instances of people ending up in an elderly care setting that is not necessarily as appropriate for them as it could be, which may have stymied the possibility of them reaching out to a more individual lifestyle and having support in the community.

The Bill presents an opportunity to ensure that the guidance reflects the fact that those with Down syndrome need to be very much part of what they need for their future, so that the services that are built around them reflect that and ensure that the outcomes that they know they are capable of are reached. Although we have the Equality Act 2010 and the reasonable adjustments that go with it, they need more focus and definition through this Bill, for all the reasons that the Down’s Syndrome Association has illustrated so well in the case studies that it set out and that show the difference that will make.

I accept the point about other conditions, but doing all that will provide a blueprint for how each individual person, irrespective of their condition, can be provided with guidance, support and wraparound services. We need to use the Bill as a way to demonstrate our commitment not just to those with Down syndrome, but to all those living with a learning disability for whom we know we can do better by bringing together the services that already exist more effectively. With medicine and our understanding of conditions improving, we can ensure that the way that we build services reflects the needs of all those who require them.

I am hugely supportive of this Bill, for the personal and professional reasons I set out, and I very much hope and expect it will make a significant difference to many lives. It truly is the landmark that my right hon. Friend the Member for North Somerset suggests.