Down Syndrome Bill

Baroness Jolly Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

[Baroness Jolly (LD)]

My Lords, I support the noble Baroness, Lady Hollins, and all that she has said today and, indeed, all of her work. I should be brief—only a few minutes—but the alternative, more in-depth look at this would take rather longer than the powers that be would allow. I would like to thank Dr Fox for the time he spent in the briefing, which was very helpful.

In the standard way, I have no interests to declare. But in a rather sort of non-Parliament way, I have two interests that have informed the way I think about this area and this debate. Like many others, when I was much younger, I had contact with a family member—my cousin, Daniel—who had Down’s syndrome. Like many people with Down’s syndrome, he sadly died as a child when he was six, leaving my uncle and aunt totally bereft. But I can certainly remember him as a happy, cheerful child who is very much missed by the family.

Secondly, for three years I was chair of one of England’s larger providers of services for people with a learning disability. There, I began to understand the issues about the care of an adult with Down’s syndrome and the many areas to be considered in their care. Although not interests in the parliamentary way, these two points have coloured what I want to say about this Private Member’s Bill.

This, of course, in the main is an excellent Bill—clear, concise and with the main bases covered. Thinking about the relevant authorities, we should consider the services delivered by the Department of Health and Social Care, the DfE and the Ministry of Housing, Communities and Local Government—which now goes under the somewhat snappier title of the Department for Levelling Up, Housing and Communities.

I wonder if the Minister could tell the House what areas he thinks the Department of Health and Social Care would have to augment, were this Bill to be passed? Would the Minister tell the House what conversations he has had with officials about this Private Member’s Bill? What changes would need to be made in the unlikely event that it finds its way on to the statute book? We all know it will not, but for the 40,000 people who have Down’s syndrome and their families and carers, could the Minister tell me when was the last “in the round” look that the department made of services for and care of people with Down’s syndrome? When did that last take place? Who is responsible in Whitehall for ensuring they are appropriate? Is Down’s syndrome treated separately from learning disability, or are decisions made about those with learning disabilities taken as all right for those with Down’s syndrome?

One of the things that my time chairing a learning disability provider organisation taught me was that those we supported really valued being involved in decision-making. I discovered that meeting the needs of someone with Down’s syndrome was best done by involving the individuals in the decisions being made about them, along with parents and family. The Bill is silent in its guidance about involving the person with Down’s syndrome in decisions about how they live, with whom and where. We often fail to do this and, were this Bill ever to reach Committee, I would like to lay an amendment which would ensure that people with Down’s syndrome—or any of the other learning disabilities—could say, with their hand on their heart, that “No decision is ever made about me without me.” We would not fail to involve people with a physical disability in legislation relating to them. The Secretary of State should make a provision to involve people with Down’s syndrome—or any other learning disability—in any guidance written by the department.