The Down Syndrome Act, having passed through both houses of parliament, gained royal assent on 28 April. The Act, which came into effect immediately, aims to ensure that the local authorities for health, education and social care consider the specific needs of people with Down syndrome when exercising their relevant functions. This legislation comes as part of the government’s commitment to improve outcomes for people with learning difficulties. However, campaigners have raised serious concerns about the contents and purpose of the Act, criticising the lack of consultation and the singling out of Down syndrome over other learning difficulties.
The All Parliamentary Group for Down Syndrome, which includes as some of its trustees people with Down syndrome, suggests that people with the condition face specific social, educational and health challenges, and so need specific considerations. MPs who supported the Bill in parliament cited exclusionary practices in schools, a lack of employment opportunities and widespread stigmatisation as reasons to back the Bill.
The Down Syndrome Act has drawn its fair share of opposition. Critics suggest that there is little evidence to suggest that Down syndrome should be distinguished from any other learning difficulty or chromosomal disorder in this kind of legislation. Some parents have argued that the bill could act as an excuse for the government not to introduce legislation on the rights of people with other learning difficulties. Baroness Brinton told peers at the Bill’s second reading that she feared this new hierarchy “risks doing harm to the rights of other disabled people”. Before the Bill became law, Genetic Alliance UK called for an amendment to include in the Bill those with genetic conditions with significantly overlapping features to Down syndrome. However, the Bill passed with no amendments.
Despite opposition to the legislation, many parents celebrated its introduction, gathering outside parliament late last year as the Bill passed, wearing blue, pink and purple – the colours of the newly formed Down Syndrome Policy Group.
Much criticism has stemmed from a lack of detail within the Act. The sparse, six-page document simply states that there will be a duty on local authorities to assess the needs of people with Down syndrome and plan provision accordingly, creating a significant gap between the ambitions of the legislation, and its actual contents. Parent advocate and previous CSIE Trustee Sharon Smith notes that the “detailed ‘meat’ will be added to the bones of the Act through the guidance”, but that this guidance has not yet been produced, rendering the Act in its current form ineffective. The Down Syndrome Association , who were not involved in the Bill’s development, has criticised the government’s new legislation as weak and potentially divisive, drawing attention to far more detailed existing guidance for people with Down syndrome on areas such as health and education.
Legal experts have taken issue with the phrasing of the Act. The legislation merely states that authorities must pay “due regard” to the guidance, an obligation that is not particularly stringent, and does not guarantee the provision of services. Some suggest that this legislation, despite its purported noble aims, actually places very little pressure on the relevant authorities to make provision for those with learning difficulties.
CSIE shares all the above reservations and more. We are disappointed by the contents of the Act which, having been published without the guidelines on which it relies, are at the least ineffectual and potentially divisive. We also agree with those who assert that there was no reason to introduce legislation specifically for people with Down Syndrome, as their rights are already protected by the Equality Act (2010) and, for children and young people, the Children and Families Act (2014).
