Down Syndrome Bill

Edward Timpson Excerpts

3rd reading
Friday 4th February 2022 Commons Chamber

[Edward Timpson (Eddisbury) (Con)]

It is a real pleasure to follow my right hon. Friend the Member for North Somerset (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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.

[Edward Timpson]

I think all of us are very moved by what my hon. Friend has had to say. Does she agree that her point about the battles she described demonstrates how important it is that, as the Government develop the guidance—I know my hon. Friend the Minister will very much have regard to this point—they involve the experiences, views, opinions and, I suspect, recommendations of those who have Down syndrome, or their parents, carers and supporters, so that they form the best possible guidance to deliver the right type of support at the right time and in the right way? That might then mean that those battles are much reduced and hopefully eradicated in future?

[Siobhan Baillie]

I thank my hon. Friend for his contribution not just in that intervention, but in his speech. I loved the Shakin’ Stevens stories. I defer to his expertise as a former children’s Minister. That is why the Bill will do so much good. Even the fact that we are having this long debate today with so many colleagues is incredibly moving. I am pleased to see that the Minister is as equally moved as me and that it is not just me with the tissues on these Benches.

These problems have existed under multiple Governments, so parties of all political colours should hang our heads but also want to see improvements. We all know, from our surgeries and inboxes, that parents of disabled children who have to come to see their MP are often completely exhausted. They are exhausted by the fights to get things for their children that they know they should already have or have seen other children have. They also know that they have no choice but to continue fighting. I know that MPs of all political colours try to help, but we have to get better at getting the legislation and the policy right so they do not get to that stage.

The Government are trying really hard to make improvements to legislation and to the system and the practicalities for people with disabilities. The Minister with responsibility for disability, the Minister of State, Department for Work and Pensions, my hon. Friend the Member for Norwich North (Chloe Smith), is absolutely excellent and I have real confidence in her ability and commitment to secure change.

As part of my small role in trying to push through those changes, I sit on the Work and Pensions Committee, and we have been doing an inquiry into things such as personal independence payments. During the inquiry, we heard from an excellent representative from the Down’s Syndrome Association. She gave a few examples of things we can change that directly impact people with Down syndrome. She explained that it is usually the parents making welfare and disability applications.

We have heard today from a number of hon. Members that, thankfully, those with Down syndrome are living much longer. Their life expectancy is no longer 30 years, but 60 years. That means that their parents are also significantly older, and we must bear that in mind. The constant drive for digital-only application is welcome in many respects and will mean there is a record, so hopefully we will not have the constant losing of paperwork that many families have to deal with. However, there are many elderly families and elderly parents who cannot cope with that, and we must build that into our systems.

Separately, there is a new in-person assessment approach to PIP, which can throw up some interesting results—unintended, in some cases. Where previously a family could sit down and do a written submission about what they needed and what they wanted changed in their PIP, doing an in-person assessment is very reliant on the person with Down syndrome.

My nephew Rhys’s favourite word is yes, because he gets a positive response to it. If someone says to him, “Do you play for Reading Royals?”, he will say yes. “Do you run for a bus?” He will say yes. One thing that my sister said made her nearly jump up and down was something like, “Do you have your own life partner or girlfriend?” He was saying, “Oh yes, oh yes.” She said, “No, no, no! He absolutely doesn’t.” We must bear that in mind when we create those policies and programmes, because it will not always work for everybody.

I welcome all the focus on and learning about people with Down syndrome today. I am still learning—I think we all still need to learn from people with Down syndrome and listen to them.

--- Later in debate ---

[Jo Gideon]

My hon. Friend is absolutely right. All the statutory authorities need to understand that the statutory duty in this Bill will require them to provide guidance and a level playing field for people with Down syndrome.

[Edward Timpson]

As a fellow member of the Health and Care Bill Committee that looked at the new integrated care systems that are being introduced, my hon. Friend will know that they have been delayed slightly until April this year. Does not that present an opportunity for the Minister to write to all the chairmen and chief executives of the interim boards, or those who have been appointed to the new interim care boards about the Bill; and, hopefully, for them to act in due course so that they are prepared for the guidance that is coming and can inform the wider board about that at the earliest opportunity?

[Jo Gideon]

I thank my hon. Friend. It is absolutely right that the integrated care boards and the Health and Care Bill need to accommodate what is suggested in this private Member’s Bill. The integrated care boards, as I have said, will have a huge breadth of responsibility. Unless we are quite specific on certain duties, they may get lost and that cannot be allowed to happen.