It is. Diagnostic overshadowing is very important, in that we should not miss things in people with Down syndrome because we are looking the other way, or we are distracted by the diagnosis and not looking sufficiently at the person. Greater professional education—and this goes back to the point made by the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier)—is a key part of the empowerment of the individuals for whom this legislation was produced. I know from my own medical education that there was not a great deal of it that involved us learning about specific needs. For the medical profession, the sort of overlooking that the
hon. Gentleman describes is a real risk if the thought is not there that someone may see a different position from the one they should because of the very overshadowing that he describes. I imagine he may enlighten us further on that particular issue, and I hope he will because it is a real issue that needs to be examined fully.
The second important change in our legislation was that we included in it the need for a named individual on the new integrated care boards to be responsible for the implementation of the Down Syndrome Act. A very senior Member of this House said to me during the passage of the Bill in Committee, “Do the Government realise the floodgates that they may be opening in agreeing to this?” I said that I was not sure, but that it really was not my problem. I think this is a tremendous innovation, because all too often we have an anonymised bureaucracy when it comes to the delivery of the things that Parliament intends. We can vote for things in this House and, with taxpayers’ money, we can fund them, but if we do not know who is responsible for the delivery in our own locality, it becomes difficult for us as Members of Parliament to know who to get in touch with.
The de-anonymisation of the civil service, which is something I have long and profoundly believed in doing, received its first outing in that Act. It may be a by-product —in my mind it was not that; it was an essential principle —but none the less it is extremely important. With this new system, for the first time, individuals, families and advocates for people with Down syndrome will know who is responsible. For once, there will be a named person in our system who people can turn to for either assistance or redress, depending on the nature of the problem. I hope we will extend that principle further in the provision of public services. For too long in this country, taxpayers have provided the funding, but they do not have accountability in the delivery mechanisms of those public services. It is, in many ways, a quiet revolution that I hope this Act will usher in. It is a principle and a precedent that has been much understated in the interpretation of what Parliament has done.
The guidance itself has been subject to long and detailed consultation, and I look forward to the draft publication in the summer. The Government face a number of challenges with this, which are worthy of debate. One question that was frequently raised in both Committee and the House was, “What about those with problems similar to those with Down syndrome; are we effectively creating a ladder of preferment in the provisions of public services?” Quite wisely, the Minister at the time said that it would be reasonable to consider those with overlapping problems at the same time as we were looking at the implementation of the Act. I say gently, however, that while that is absolutely right, we must also remember that the Act is specific to Down syndrome. When it comes to Down syndrome there is no doubt about the diagnosis, and unlike many other conditions where there are overlapping symptoms and signs to consider, there is no doubt about it. Down syndrome is not a subset of other conditions or of learning disabilities, although on a Venn diagram there will be a huge overlap; it is a specific condition and we must regard it as such.
I would like the Government to consider some specific areas, one of which relates to education rather than health. This is a formal request to Ministers to add Down syndrome as a separate category to the annual
school census. Why? Because there is currently no Down syndrome-specific school data available, including numbers, location, or educational settings, because individuals with Down syndrome are included only in the general special educational needs and disability school numbers. If we are to have specific legislation, it makes sense to have specific data with which to interpret the success of its implementation. Children with Down syndrome in the education system will have specific speech and language issues, significant fine and gross motor delay, cognitive delay, hearing loss, visual issues—we detailed that on Second Reading—social and emotional needs, and specific and unique learning profiles associated with Down syndrome. Some of those conditions will be shared with other syndromes and medical conditions, but many will be specific to Down syndrome. If we are not to get the overshadowing problem, we must be clear about what we need to know about this.
In New York I was able to set out the sort of cases and advances that we have made in this country by being able to utilise a range of tools that enable people with Down syndrome to make more decisions for themselves. As we have a better understanding, for example among social workers and community medical staff, we are increasingly able to deploy those tools to ensure that those who have a voice—a voice that would not necessarily traditionally be recognised in our system—are able to make more decisions for themselves. That was at the heart of what the UN 12th World Down Syndrome Day meant.
I do not wish to speak any longer than necessary and take up colleagues’ valuable time, so I will end with this quote from Heidi Carter, who I have come to know increasingly well. She is a valiant campaigner for Down syndrome rights, and she states:
“I have shown everyone that Down syndrome is not something to be scared of and that people with Down syndrome live happy, amazing, fulfilled and independent lives!”
Congratulations to her and her husband on their marriage. I wish them well. She said:
“We are not going to give up. I think that all human life is valuable and should be treated with respect however many chromosomes we have!”
I do not believe there is a single one of us in this House who would not agree with that sentiment.
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