On March 19, 2025, a pivotal debate unfolded in Westminster Hall concerning the implementation of the Down Syndrome Act 2022. Enacted three years prior, this legislation mandates the creation of specific guidance for local, health, and educational authorities to address the distinctive needs of individuals with Down syndrome.
Graham Stuart MP, who spearheaded the debate on behalf of the All-Party Parliamentary Group on Down Syndrome, stressed the critical need for definitive guidance to ensure that people with Down syndrome receive tailored support based on their very specific learning, health and speech and language profiles. Despite the production of multiple draft versions, the guidance thus far has failed to adequately meet the stipulations of the Act. Stuart cautioned the current guidance reduces Down syndrome to a subset of learning disabilities, which fails to recognise the unique challenges faced by individuals with Down syndrome.
This was echoed in a statement outlining concerns from Sir Liam Fox, the Bill’s original sponsor, which was read to the chamber:
“You will remember that during the passage of the legislation we specifically built in the ability for more than one committee to scrutinise the progress and outcomes relating to the Act.
We made very clear that the legislation was specifically for, and around, those with Down Syndrome as a definable collection of predictable medical conditions and specific life challenges, including those relating to increases in life expectancy. We encountered repeated resistance to this concept, especially from Department of Health officials. We were constantly told that Down Syndrome was effectively a subset of learning difficulties, therefore covered by other government programmes. This is simply not true, and the legislation would not have been passed in the form that it was if we had accepted this contention.
Despite repeated promises we have not yet seen the formation of an effective cross Ministerial task force. There has been little Ministerial engagement with stakeholders, with many identical letters being sent out in response to demonstrably different queries. Now, three years after the legislation reached the statute book, this is completely unacceptable.
You will recall the civil service resistance to named officials at ICB level being responsible for implementation of the Act. This ‘de-anonymisation’ of those responsible for service provision was rigorously opposed by Department of health officials and it now seems that the full weight of civil service inertia has been brought to bear on legislation that they opposed, despite it being unanimously supported by the elected House of Commons.
I believe that it is now time for both Ministers and officials to be held to account for the lack of progress in producing coherent guidelines, something that is regarded as a betrayal by many of those who were so encouraged and inspired by the passage of the Down Syndrome Act itself.”
During the debate the need for specialised speech and language therapy for individuals with Down syndrome was highlighted. The most recent version of the guidance, published in December, only makes vague references to specialist therapy which underplays the need for all people with Down syndrome to have specialist speech and language support from birth into adulthood. The document’s vague references to such essential services fall greatly short of the community’s expectations and needs. Stuart urged the government to honour its commitment by delivering guidance that is truly “fit for purpose,” enabling those with Down syndrome to access necessary support services effectively.
As well as highlighting widespread concern about the guidance, MPs praised the ongoing work of the National Down Syndrome Policy Group, as well as celebrating their local support groups and the invaluable roles they play in their communities.
The debate serves as a critical juncture in ensuring that the draft guidance meets the unique needs of people with Down syndrome as initially intended, helping them to receive the support they deserve, and fostering a more inclusive society.
The debate can be viewed in full here.
