Dear Colleague,
RE: Down Syndrome Private Members’ Bill
I am writing to you with regard to Dr Liam Fox MP’s Down Syndrome Private Members’ Bill, which is scheduled for its Second Reading in the House of Commons on Friday 26 November 2021. I am delighted to offer my support for this Bill as the Minister of State for Care and Mental Health, and to confirm that the government is supporting it.
The Bill, which can be accessed at https://bills.parliament.uk/bills/2899/publications, aims to improve services and life outcomes for people with Down syndrome. It does this by requiring that a number of authorities when providing certain health, social care, education and housing services take account of government guidance. The guidance will set out the steps it would be appropriate to take to meet the specific needs of people with Down syndrome. The Bill also requires the government to issue and publish guidance of that sort and consult relevant parties about the content of the guidance. There are around 47,000 people with Down syndrome (alternatively ‘Down’s syndrome’) in the UK, and many face significant challenges throughout all stages of their lives.
We know that people with Down syndrome often have poorer health outcomes than other people with a learning disability. Sadly, the COVID-19 pandemic has highlighted this, with research indicating a greater risk of severe outcomes from COVID-19 in people with Down syndrome, compared to other people with learning disabilities, as well as to the general population. People with Down syndrome and their families can struggle to access services such as speech and language therapy, additional educational support, and appropriate levels of social care support. This can come about due to a lack of general awareness and understanding of education, health and social care staff about the specific needs of children and adults with Down syndrome.
The Bill will raise relevant authorities’ awareness of their existing legal duties, and improve knowledge and understanding of how to meet the needs of people with Down syndrome. As outlined above, the Bill places a new duty on the Secretary of State to issue guidance in England to certain health, social care, housing and education authorities. This guidance will set out the steps it would be appropriate for relevant authorities to take in order to meet the needs of people with Down syndrome. The Bill also creates a new duty on the relevant authorities to have due regard to the guidance when exercising certain functions. Together, these duties are intended to ensure that these authorities take account of the specific needs of people with Down syndrome when planning, designing and providing services and support.
The Bill requires us to consult on the proposed guidance and we intend to do so widely, including with people with Down syndrome, families, carers and those responsible for implementing the guidance to ensure that it meets the needs of people with Down syndrome.
Alongside this, we are considering how people can seek and are supported to seek redress where they do not receive the support they are entitled to. Placing a statutory duty on relevant authorities to have due regard to the guidance ensures that there is a level playing field for people with Down syndrome. These duties do not require, and are not intended to result in, enhanced treatment to be given to those with Down syndrome over and above other groups, such as other people with learning disabilities. These duties are intended to ensure that the specified authorities take specific account of the identifiable and unique needs of people with Down syndrome when planning, designing and providing services and support so that they can access the support that they are entitled to. In this way, the Bill will address the inequalities faced by people with Down syndrome and lead to better life outcomes.
At all times we will reflect on any learning or ideas that we develop under the auspices of this Bill and apply them more widely where that is the right thing to do. I hope this letter is helpful; a copy has been placed in the House Library. I would be happy to meet with you to discuss any matters relating to the Bill in further detail and I hope that you are able to support this important Bill.
