Down Syndrome Bill

Baroness Brinton Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

[Baroness Brinton (LD) [V]]

My Lords, I declare my interest as a vice-president of the Local Government Association. I thank the noble Baroness, Lady Hollins, and Dr Fox for their time in answering questions at yesterday’s helpful briefing, and the various people and groups who have written to me and other Peers. It was also a pleasure to support the amendments to the Health and Care Bill of the noble Baroness, Lady Hollins, on mandatory training for staff working with people with learning disabilities and autism. I am delighted that the Government agreed. I too pay credit to the noble Baroness, Lady Hollins, for her outstanding campaigning over many years for people with learning disabilities.

My Spanish nephew Alex, now in his late 30s, has Down’s syndrome. As a family we have seen this baby grow into a fine young man, hampered only by the perceptions of others. My sister has had to fight for his rights, be it for a Covid vaccine this year or for his medical needs over many years. She had to take on the education authorities because there was no integration at all in schools: “children like that” went to a special school that was, in reality, a hospital, with locked doors and staff in white coats. She won her campaign and he was the first child with Down’s syndrome to go to mainstream primary in Majorca. But the most important part of his story so far is that he is a fantastic sportsman. Twelve years ago he won a European championship in karate; he has also swum in national competitions, and I cannot tell you how proud we are of his achievements. Yet too many people do not see past the condition, nor understand that every person with Down’s syndrome is an individual and has differing needs.

Another Alex, the same age as our Alex, is the daughter of our very close friend. She went to primary school and Sunday school with our children, and now lives happily in a house near her mum, with support from carers. She is non-verbal and needs constant support when awake. She loves her house, her daily routine and her family. As with almost all people with Down’s syndrome and their families, it has not been easy, but for this Alex, it works.

So when I read this ambitious and laudable Bill, my first question was: how will this help people with Down’s syndrome and their families? Our role in the Lords is to make sure that legislation delivers the intention of a Bill and does not create unintended consequences. I share the concern of the noble Baroness, Lady Neville-Jones, that inadvertently this Bill will create a hierarchy of disability that risks doing harm to the rights of other disabled people, particularly people with learning disabilities, which may also be discriminatory.

By their very nature, the Bill and subsequent guidance will create a unique and separate focus on the needs of people with Down’s syndrome, as well as duties and rights that are exclusive to this group, which risks undermining the principles of equality and non-preferential access to resources across education, health and social care, and employment. There is also a danger that it may disadvantage individuals with other disabilities who do not have the same legal recourse if providers fail to abide by the guidance. Can the Minister tell me what work will be undertaken to ensure that the Bill does not disadvantage people with disabilities other than Down’s syndrome? If the Minister believes that no such work is required, what is the purpose of legislating to provide exclusive duties relating only to people with Down’s syndrome?

I am also concerned that the Bill lacks power to achieve its aims, which risks causing confusion among public bodies and people with Down’s syndrome and their families about their duties and their rights.

In common with people with learning disabilities generally, people with Down’s syndrome and their families face significant inequalities and discrimination in our society. The current framework of legislation that we have to address this includes the Care Act, the Children and Families Act, and the Equality Act. However, they have been systematically weakened by underfunding and by removing mechanisms through which people can secure redress.

Understandably, expectations have been raised very high by the Bill, yet I see evidence from the Minister that it and the resulting guidance have no power to address these deep-seated problems. For example, can he explain how it will ensure that people with Down’s syndrome can secure appropriate and adequate social care and that our classrooms include additional teaching assistants? The Bill does not say that. Can the Minister provide examples of the differences he believes that this Bill will make in the context of health, social care and education?

Dr Liam Fox commented that the Bill

“sets a precedent that can be followed later on in other areas.”

That has been commented on by noble Lords this morning. Will the Minister tell me whether it is the intention of the Bill to set a precedent where each diagnosis will require a new set of guidelines and, if so, what continued role the Government see for the existing legal duties which underpin disability equality? In Committee in the Commons, Gillian Keegan said at the Dispatch Box:

“We recognise that people with genetic conditions other than Down syndrome may experience problems similar to those of people with Down syndrome, so we will consider the overlaps and linkages between such conditions and Down syndrome through consultation on the development of the guidance”.—[Official Report, Commons, 26/1/22; col. 8.]


I know that by giving one group rights when resources are scarce, others will not get them. I echo the question asked by the noble Lord, Lord Farmer: what happens to those who have other genetic conditions, or none, but have learning disabilities, who must rely on the good will of Ministers in the future, and to those with learning disabilities who may not fall into this category? Here in Watford, our CCG decided some years ago to close the children’s respite centre, Nascot Lawn, because in its view respite care was not statutory. Children eligible for respite care have multiple and profound needs, and personal care for them has to be delivered by nurses or by family members trained by hospitals. Twice the Nascot Lawn families won High Court judgments against the closure and the removal of that respite care and the lack of proper provision.

The CCG repeatedly said that its resources were scarce and it had to prioritise just statutory services. It closed in 2018, and these children and their families have struggled ever since to get the support they need. It did not matter that their EHCPs said that these children and families needed respite care; it was all about resource. At least one family could not manage to look after their child without that respite care: being on duty 24 hours a day and every night had taken its toll. Will other people with high levels of need but who are not people with Down’s syndrome move even further to the back of the queue?

There is also concern that the Bill and guidance risk undermining principles concerning person-centred assessment and support, embedded in law, whether in relation to support for children and families or support for adults, by elevating the condition and suggesting that this predicts needs. That is why I gave the illustration of our two people named Alex. This not only represents a regressive step politically, by advancing a medical model of disability and elevating diagnosis over individual needs; it will also create considerable legal and regulatory complexity for local councils, the NHS and schools at a time when they are already stretched in meeting statutory duties. Will the Minister recommit to the principles of person-centred rather than diagnosis-centred assessment and support and tell me what work will be undertaken to embed this person-centred approach at every stage of the development of the guidance?

Given that it was announced in the Commons that there may be a “named person” on integrated care boards, which we have discussed at some length during the passage of the Health and Care Bill, what role will they have in ensuring the compliance of public bodies with the guidance? Will that be solely for people with Down’s syndrome, especially in the light of the past practices of CCGs, which I have outlined?

I will make a brief point on the proposed guidance. As my noble friend Lady Jolly said, will Ministers ensure that the principles of “No decision about us without us” ensures that the voice of people with Down’s syndrome is represented? Although the Commons has a mechanism to scrutinise guidance, that is not true in your Lordships’ House, so will the Minister undertake to ensure that there is time for a debate on the guidance, as it is published and debated in the Commons? As the noble Baronesses, Lady Bennett and Lady Uddin, outlined, government resources have been a real issue. The net is full of holes not through a lack of guidance, White Papers and good will but through a lack of government investment and strategic leadership for over a decade.

I think that everyone who has spoken at Second Reading today and in the Commons is passionate about ensuring that people with Down’s syndrome and their families can remove the current structural and social barriers that they face. The concerns that a number of Peers have raised today are important, and the Lords needs to be able do its job and to have responses from the Government in Committee and on Report to ensure that the Bill can deliver its aspirations and that it will not penalise others with learning disabilities because of a new hierarchy of resources. So will the Minister agree to meet those who have spoken of their concerns today prior to Committee, when it is clear we will be looking at a number of amendments?