What is the Down Syndrome Bill?

The Down Syndrome Bill was introduced in Parliament as a Private Member’s Bill. It has now completed its parliamentary passage and is due to receive Royal Assent soon, but what does this all mean?

A Bill is draft legislation that only becomes law if it successfully passes through the House of Commons and House of Lords. When it receives Royal Assent, the Bill then becomes an Act of law, and it will be known as the Down Syndrome Act 2022.

The response to the Down Syndrome Bill is mixed and not helped by some wrong reporting on what the Bill will actually achieve once it becomes the Down Syndrome Act 2022. In summary some praise for it whilst others have raised concern that it doesn’t add to the legal duties already in place in the Children and Families Act 2014 (‘CFA’); the Special Educational Needs and Disability Regulations 2014; and the Equality Act 2010. 

Regardless of your view on this, one big positive that should be acknowledged is the fact that it is a Private Member’s Bill, and most of these are not successful in getting through the parliamentary passage. This means that most Private Member’s Bills never become law. The fact that the Down Syndrome Bill will soon become law, in my view shows there is an appetite in Parliament to do more with to meet the needs of persons with SEND, but whether or not the Bill does that is another matter. 

The purpose of the Down Syndrome Bill is to require the Secretary of State for Education to give guidance to a number of persons it refers to as a “relevant authority”. From an education perspective this includes:

• Governing body of a school in England
• Governing body of an FE institution in England
• Proprietor of an Academy 
• Proprietor of a s41 approved institution in England
• Management Committee of a PRU in England
• Providers of relevant early years education in England. 

The Bill requires the above “relevant authorities” to have “due regard” to the guidance, which will set out the appropriate steps for them to take to meet the needs of children and young people with Down syndrome. The difficulty with the use of the words “due regard”, is that it does not actually require the contents of the guidance to be complied with.  The Bill states this would apply when exercising “relevant functions”, which in the case of the above “relevant authorities”, are those set out in Part 3 of the CFA. 

Part 3 of the CFA, sets out the measures for children and young people in England with SEN or disabilities, such as duties regarding EHCPs and other duties on Local Authorities. The contents of the guidance is not yet known but it cannot create any new legal duties for example to provide a certain type or level of support. It also cannot change the duties that already exist under the CFA; Special Educational Needs and Disability Regulations 2014; and the Equality Act 2010.

At best it will include guidance on steps to take/ consider when complying with those duties that already exist, in cases involving children and young people with Down syndrome. It will not create any new legal duties other than for the guidance to exist.  Guidance is of course helpful but guidance already exists in the SEND Code of Practice: 0 to 25 years and the same duty to have “due regard” to that guidance also exists. So what would guidance under Down Syndrome Act 2022 add that isn’t already included in the SEND Code of Practice?  

The guidance would of course be specific to Down syndrome, which could be helpful as the SEND Code of Practice: 0 to 25 years does not reference Down syndrome within it. In contrast is does reference some specific diagnoses such as Autistic Spectrum Disorder, but those references are minimal. There is an argument therefore, that if additional guidance is deemed useful for those working with children and young people with Down syndrome, that other diagnosis specific guidance would be helpful as well. However, this has not been proposed.

In summary, from an education perspective, guidance specific to meeting the needs of children and young people with Down syndrome, is of course welcomed. However, it does not change the legal duties already in place.  There are serious issues with the SEND system in England, as outlined here and whilst the intentions of the Down Syndrome Bill are good, the Act when passed, is unlikely to cause positive change in the educational provision delivered for children and young people with Down syndrome. 

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