Down Syndrome Bill

Part of the debate – in the House of Commons at 12:48 pm on 4th February 2022.

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Photo of Ruth Edwards Ruth Edwards Conservative, Rushcliffe 12:48 pm, 4th February 2022

I commend my right hon. Friend Dr Fox on the Bill and on his long-standing championing of people with Down syndrome. I know it stems from his time as a GP, his personal life and his time in this place.

The Bill is making an important simple but necessary change to improve the lives of people with Down syndrome. The issue matters to many people in Rushcliffe. I have heard from many constituents and organisations such as the National Down Syndrome Policy Group in praise of my right hon. Friend’s action and willing me on to support it. I am proud that the Government are supporting the Bill and to speak on the issue today.

I understand that people living with Down syndrome, their carers and families can find themselves disadvantaged by the inequality of access and the provision of basic services. My hon. Friend Selaine Saxby has set out some really personal examples of how that is affecting her constituents today.

Starting at a young age, people with Down syndrome face greater challenges in school and in life than their peers. I know that many parents of children with Down syndrome worry about sending them into mainstream education, where support may vary wildly. Other parents are left facing the cost of specialist support where help is not available locally. As a Conservative, I want everyone to have opportunity and choice. For some, specialist education might be the right path; for others it might be support in a mainstream school. The point is that people need to have choice. They need to be able to choose their own destiny and, at the moment, there are too many people with Down syndrome who are not able to do that. I am so pleased that the Bill will start to address that inequality.

Shockingly, although people with Down syndrome are likely to be hospitalised more often and for longer periods of time than people without the condition, there is little guidance for NHS commissioning boards or trusts on how best to care for their specific needs. Adults with Down syndrome are likely to require social care and council support much earlier in life than the national average, yet local authorities do not have a standard playbook or guidance on meeting those needs. Because of that, young adults with Down syndrome often end up living in facilities with people several decades older than they are, with no specialist care available.

Local authorities already have a duty to provide support and carry out assessments of need to help them to meet that obligation, and the Bill will provide much-needed guidance on best practices to local authorities who are delivering healthcare, social care, housing and education-related services, helping them to understand and deliver on their duties. That work will make public amenities more accessible and inclusive for the Down syndrome community, and help them to lead active, healthy and more independent lives. It will also raise awareness among the wider public, giving them insight into the facts of living with Down syndrome.

Multiple organisations have welcomed the steps the Government are taking. The chief executive of disability charity Mencap described this as

“a positive step towards ensuring that the needs of people with Down syndrome are met.”

I know the Government are consulting on how the proposed guidance will look so that we can learn from families, communities and organisations that know best. As my hon. Friend Edward Timpson said, this is something that people need to feel is being done by them, not to them. It is so important that they feel that this is something that they are consulted on and included in, and that is driven by them. I look forward to seeing the outcome of the consultation.

I hope that what we do here in the Bill can serve as a model for future work and discussion on helping those with other neurodevelopmental conditions, making society more accessible and fairer for everyone. I want to reference the comments made by my hon. Friend Laura Farris, who described that very well. I come from the cyber-security sector, where we have lots of people with neurodiverse conditions excelling in jobs. There is no reason why that cannot happen in many more sectors of the economy. I really hope that we can use the Bill as a launchpad for expanding the number of conditions that have guidance that public authorities need to take into account.

People with Down syndrome deserve the same access and choice to education, public institutions and services as anyone else. They deserve the same opportunities to lead a healthy, fulfilled and prosperous life, and I am pleased to support the Bill, which will help to make that possible. I very much hope that we will see it enacted for World Down Syndrome Day on 21 March.