Down Syndrome Bill

Baroness Bennett of Manor Castle Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

[Baroness Bennett of Manor Castle (GP)]

My Lords, I must begin with a tribute to the noble Baroness, Lady Hollins, who works so hard for people with learning disabilities and other disabilities in your Lordships’ House, as I see in person very often, and I was privileged to see recently in a late-night—or possibly early-morning—stroll up Whitehall during the Health and Care Bill to get some more information one-to-one.

The right honourable Liam Fox—I note he is listening to our debate today—said of this Bill in the other place:

“it is about people who deserve the same ability to demand the best health, education and care as the rest of our society.”—[Official Report, Commons, 26/11/21; col. 579]

Of course, nobody could disagree with that aim, but it is true for people with other chromosomal abnormalities, people with learning disabilities and many other people with special needs in our society. The fact is that our society is profoundly discriminatory. People are disabled by the barriers society puts in their way. Physical barriers, as we have just heard from powerful testimony from the noble Lord, Lord Touhig, are attitudinal barriers which are frequently still, sadly, awful.

There are 1.5 million people with learning disabilities in the UK and about one in 50 babies are born with a chromosomal abnormality. As the noble Baroness, Lady Hollins, has often drawn the House’s attention to, men with a learning disability have a life expectancy of 66 years—14 years below that of the general population —and females 67 years, which is 17 years below the general population, reflecting some of that discrimination that I referred to.

It was not my intention to speak on this Bill—your Lordships’ House may know that I have rather a large number of Bills on my plate—but I received large numbers of representations from people concerned about it, which is what led me to be in your Lordships’ House today. Some of those concerns reflect what the noble Baroness, Lady Jolly, just said. When I looked into this, I was quite surprised that in a press release about the Bill, the Down’s Syndrome Association said that it had not been

“invited to be involved in the development”

of the legislation. That very much provoked me to think of the phrase that the noble Baroness, Lady Jolly, just used: nothing about us without us. If the noble Baroness is going to table an amendment along those lines, I would certainly be interested in supporting it.

The first concern that families and groups of parents with children and adults who have Down’s syndrome have come to me about is that the Bill will have no substantive effect on the rights and lived experience of people with Down’s syndrome and their families because the duties in it are narrowly drawn; demand very little of public bodies; crucially, attract no new funding; and provide no meaningful mechanisms for enforcement or redress.

There is a really serious concern that the Bill implies that a diagnosis predicts how a person’s needs should be best met, rather than people’s personal, individual and unique needs, characters, gifts, talents and aspirations, and the idea that it is possible to generalise about a highly diverse group of people based directly on diagnosis alone. The families have said to me that they are concerned that this approach risks reinforcing rather than overcoming prejudice and discrimination, while undermining decades of progress in moving towards personalised support across the fields of education, health and social care.

I note—the noble Baroness, Lady Hollins, addressed this in her introductory remarks—that it has been argued that the Bill offers a model for others to follow to address other conditions and people in other circumstances, but it is very hard to imagine that we could see a whole procession of Bills addressing people with different health needs and disabilities along this model. Surely it would be better to make sure that people’s needs as an individual, whatever diagnosis they might have, are addressed.

At this point, I should declare my position as vice-chair of the LGA and NALC. The crucial issue here, surely, is resources. I am aware that the Bill was put forward by the noble Baroness, Lady Hollins, but there are questions I would like to put to the Minister if the Government are backing it. How do we know that it will have the intended impact? How will it be enforced? We talked about ensuring that there was full consultation on the guidance, but what role might Parliament play in producing the guidance? Crucially, without further resources, how could public bodies conceivably implement this new guidance?

I come to one final area of concern, looking at the discussion of the Bill in the public realm and the way it has been discussed in the press and online, about what people advocating for it or pinning their hopes on it believe it is designed to achieve, particularly around issues concerning maternal health and reproductive rights. The Bill, of course, very directly addresses the needs of people with Down’s syndrome, which legally applies only to people who have been born and therefore does not relate to the needs of pregnant women who may have received an antenatal diagnosis but do not themselves have Down’s syndrome. So I ask either the Minister or the noble Baroness, Lady Hollins, to confirm that, in the Department of Health and Social Care, the intention of the Bill is not to plan to develop new guidance or amend any existing guidance concerning antenatal care and existing reproductive rights as a consequence—save as it may apply, of course, to the needs of women who have Down’s syndrome.