EQUALITY FOR PEOPLE WITH DOWN SYNDROME!

The public consultation on the long-awaited draft guidance for the Down Syndrome Act 2022 has now opened. Bringing together existing duties in one place is welcome, and helpful for those working across health, education, and social care. However, for the guidance to fulfil the Act’s original intention—improving outcomes and ensuring people with Down syndrome receive the support they are entitled to—it must go much further.

Despite a raft of existing statutory duties, people with Down syndrome are still too often excluded from local education settings, denied the support they need, and are dying on average 28 years younger than the general population. A major cause of this is well-documented unconscious bias, low expectations, and harmful stereotypes, which can directly influence decisions made by professionals. The final guidance must explicitly address these systemic issues if outcomes are ever to improve.

Although the Department has liaised extensively with organisations, families, and expert professionals, multiple key omissions and factual inaccuracies remain—issues repeatedly raised during drafting but still unresolved. After several years of development, this is deeply concerning to our community.

The consultation process itself is also restrictive. Responses are limited to preset sentences and brief comments, and many consultation questions do not align with the content of the guidance. Sections such as the 30-page Health chapter cannot be meaningfully reviewed within a 200-word limit.

Please write to your MP, using our link, and standard letter which asks that they raise our concerns—widely shared across the Down syndrome community—with the Under-Secretary of State, Dr. Zubir Ahmed, while there is still time to make the necessary improvements. It’s really easy and just takes a minute. Please share with family and friends to encourage support.