World Down Syndrome Day

Margaret Ferrier Excerpts

Thursday 23rd March 2023 Commons Chamber

[Margaret Ferrier (Rutherglen and Hamilton West) (Ind)]

I congratulate the right hon. Member on today’s Backbench Business debate and the Act that he got through Parliament. Whether a child attends a special educational needs and disabilities-specific school or a mainstream school with SEND support is not dependent on any particular condition or diagnosis, but dependent on where the child’s needs can be best met. Children with Down syndrome can thrive in mainstream education, so does the right hon. Member agree that increasing awareness of the condition among education professionals, parents and all children is important in ensuring that children with Down syndrome have access to the right learning environment for them?

[Dr Fox]

I am grateful to the hon. Lady for making that point, because we can pass as much legislation as we like, but if the professionals at the sharp end, who are required to implement any changes or guidance, do not have sufficient understanding of the problem they are facing, we are all at a deficit in our response. I think the issue of professional education is so important not just for teachers, for whom it obviously is important, but for the medical profession, the social work profession and those involved in local government, who will deal with some of those issues relating to care, particularly long-term care. I think it is an extremely important issue.

I was able in the UN debate to show how the United Kingdom has a very proud record in legislation in this general area. The UK has a long-standing tradition of ensuring that the rights and liberties of disabled people are protected. We ratified the UN convention on the rights of persons with disabilities in 2019. Internationally, our disability inclusion and rights strategy sets out the ambition to embed disability inclusion across all our diplomacy, policy and programmes. The Equality Act 2010 legally protects people in England, Wales and Scotland from discrimination in the workplace and in wider society. We also have the Mental Capacity Act 2005, covering England and Wales, to ensure that every attempt is made to support someone to make decisions about their own lives, and that of course includes people with Down syndrome.

I would like, if I may, to say a word about the Down Syndrome Act and remind us why we passed this legislation. Primarily, it was about empowerment. The Act legislates not for Down syndrome, but for people with Down syndrome. It requires the Government in England to produce Down syndrome-specific guidance relating to health, social care, education and housing services. I hope that Members from Scottish and Welsh constituencies may be able to update the House on how this legislation is being adapted and implemented there. I will come back, if I may, to the point about its being Down syndrome- specific, because I have some concerns that that may be being lost in some parts of the consultation process.

It is important to remind ourselves about the legislation. Under the Act, public authorities such as hospitals, schools or social care providers cannot ignore the guidance when commissioning and delivering services. The guidance must set out what the unique needs of people with Down syndrome are, and what public authorities should be doing to ensure that the support needs of people with Down syndrome are met to enable them to live fulfilling lives. I will come back to this element of the guidance, because one of the issues we discussed in Committee—this has been a controversial issue in this House in relation to other legislation—is when does the guidance become instruction. If Ministers are issuing guidance that is in effect instruction, surely that should be laid before the House of Commons so that we can recognise the importance of that and scrutinise how ministerial authority is being used.

I think that for too long there have been too few levers available for individuals, families and their advocates, including us as Members of Parliament when it comes to getting fair treatment for our constituents with Down syndrome. After all, what is the point of rights in legislation if we cannot enforce them and if there is no mechanism to do so? That was one of the key elements we discussed during the passage of the legislation, and it led to two very important and, I think, innovative changes: the first is on parliamentary scrutiny, and the second is on individual empowerment.

One of the problems we have faced before is that, when Ministers issue guidance, there is very little ability for parliamentary Select Committees to take direct oversight of it. One of the principles we established—and I am very grateful to my right hon. Friend the Member for Chichester (Gillian Keegan), who is now the Secretary of State for Education, for her support in establishing this principle—is that if the guidance is in fact instruction, the guidance would be laid before Parliament, which of course means that the Education Committee, the Health and Social Care Committee and local government can all look at it in real time.

One of the things we considered was whether we would have to put a sunset clause on this legislation to enable Parliament to look at it again. The mechanism that we decided on—I think rightly—in this House and in the other place was that, in publishing the guidance, we would have real-time oversight, because when our constituents bring problems to us, we are all able to write to the Chair of whatever Committee it is and ask them to look into that particular aspect of how the Down Syndrome Act is functioning. That gives us, as Members of Parliament, a lever that we did not have before when we simply wrote a letter to a Minister and hoped for the best, which is not sufficient to implement the rights of our constituents in the way that I think we envisaged during the passage of the Act.