Down Syndrome Act 2022: Local Authority Guidance
Debate between Ashley Dalton and Caroline Nokes(3 days, 21 hours ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)
I thank the hon. Member for Windsor (Jack Rankin) for securing this debate on such an important topic. I am also grateful to him for his work with the all-party parliamentary group on Down syndrome.
People with Down syndrome should have the same opportunities to participate fully in society like everyone else, but we know this does not always happen. There is a pressing need to raise awareness of the needs of people with Down syndrome and how they can be met. While every person with Down syndrome is a unique individual, they often face common health risks.
For example, we know that almost half of children with Down syndrome are born with a heart condition. We also know that people with Down syndrome may need additional support with their speech, hearing or vision. And as the average life expectancy of a person with Down syndrome continues to rise—an increase I am very pleased to see—this means that more people require additional support in later life. This may be additional support with new, age-related health needs, as well as increased demand for social care services.
This Government are committed to ensuring that all people with Down syndrome receive the care and support they need to lead the lives they want in their communities, and we are taking action to achieve that by implementing the Down Syndrome Act. The Act lays the foundations to ensure that every person with Down syndrome can live a full and fulfilling life through accessing the health and care services they need, receiving the right education, securing appropriate living arrangements that work for them, and being supported into employment. We recognise that there is still much to do to achieve that, but I can assure the hon. Gentleman and the House that the Government are working on the implementation of the Act as a priority.
The Down Syndrome Act requires the Secretary of State for Health and Social Care to give guidance to relevant authorities in health, social care—including local authorities—education and housing services on what they should be doing to meet the needs of people with Down syndrome. Earlier this month, Minister Kinnock wrote to sector partners and the all-party parliamentary group on Down syndrome with an update on the development of the guidance, including the Government’s plan to put the guidance out for consultation by the summer. That followed a roundtable on 26 November, which Minister Kinnock—
Ashley Dalton
I’m so sorry!
That followed a roundtable on 26 November, which the Minister for Care, my hon. Friend the Member for Aberafan Maesteg (Stephen Kinnock) convened to discuss with partners how we can improve life outcomes for people with Down syndrome and the opportunities that the guidance presents in support of that.
We appreciate that many of the issues that have been raised are borne out of a desire to ensure the guidance is as effective as possible and published as soon as possible. We know just how important the guidance is. I can assure the hon. Gentleman that a huge amount of work has been, and continues to be, carried out to develop the guidance. And we, like others, want to make sure the guidance is fit for purpose and impactful.
It has been vital that people with lived experience, and the organisations that work to support them, are involved at every stage of the work to develop the guidance. A range of sector engagement has taken place. That includes a national call for evidence, partner working groups, and a review of evidence to gain a better understanding of the specific needs of people with Down syndrome. Throughout the process, there have been differences in opinion on the scope of the guidance and how it should be drafted. Officials have worked hard to build consensus on these issues, but, as I am sure Members can appreciate, it is not always possible to resolve differing opinions quickly, especially on a topic as important as this. While that means the development of the guidance has taken longer than we all had hoped, it is only right that the issues are given the due consideration they deserve. The Minister responsible set out his position on the issues at hand in his recent letter to sector partners.
Our position remains that the guidance will be Down syndrome-specific, in accordance with the Government’s statutory duty under the Act. It is our intention to include references to where the guidance could have wider benefit. That is in line with the commitment made during the Bill’s passage through Parliament. This is not about moving the focus away from Down syndrome. The guidance is about meeting the needs of people with Down syndrome. It is about taking the opportunity, through the guidance, to help as many people as possible. Officials will continue to work with partners to ensure the guidance has the maximum benefit for all communities involved.
I can confirm to the hon. Gentleman that I have today secured a commitment that the Minister will work with sector partners to ensure that people with Down syndrome have direct access to, and are supported in taking part in, the consultation.
I would like to thank the individuals and organisations across the country who have worked tirelessly to help us develop the guidance. Their contributions have been invaluable throughout, and we appreciate their continued patience while we work to finalise the guidance for consultation. We would also welcome their support to ensure that the communities they represent are aware of the consultation and can share their views.
We are grateful to members of the all-party parliamentary group on Down syndrome for their engagement and can assure them that their comments on the guidance have been considered throughout the development process. The Minister in charge wrote to the APPG on 18 March. Officials will share a second draft of the guidance with sector partners for feedback in the coming weeks. I can assure the hon. Gentleman that I will pass on his comments to the Minister responsible, as requested.
On specific training, under existing legislation, Care Quality Commission-registered providers must ensure that staff receive the appropriate professional development necessary for them to carry out their duties, and must receive specific training on learning disability and autism appropriate to their role. We expect that providers should be considering whether specific training on Down syndrome is required for their staff. Officials will work with stakeholders to signpost that effectively in the guidance we are developing under the Down Syndrome Act.
I thank again the hon. Gentleman for securing this important debate.
Question put and agreed to.