Article updated 02/05/22
What is the Down Syndrome Bill?
The Down Syndrome Bill is a private members bill sponsored by Dr Liam Fox MP and Baroness Hollins. The purpose of the Bill is to “Make provision about meeting the needs of persons with Down syndrome; and for connected purposes.”
The Bill stipulates:
”(1) The Secretary of State must give guidance to relevant authorities on steps it would be appropriate for them to take in order to meet the needs of persons with Down syndrome in the exercise of their relevant functions.
(2) Relevant authorities must have due regard to the guidance in the exercise of their relevant functions.
(3) Before giving the guidance the Secretary of State must consult such persons as the Secretary of State considers appropriate.
(4) The Secretary of State must publish the guidance in such manner as the Secretary of State considers appropriate.”
The Bill then stipulates what are relevant authorities; they include any public body that might provide services or support to people with Down Syndrome, except for welfare benefits.
Progress through Parliament
On 1 April 2022, the Bill passed the third reading in the House of Lords. As there were no amendments, the Bill is now in its final stages and will receive Royal Assent before the end of the current Parliamentary session, thereby becoming law – the Down Syndrome Act 2022.
The DS Bill is supported and championed in Parliament by 43 MPs and Lords who form the All-Party Parliamentary Group (APPG) on Down Syndrome. Their current five priority areas are:
• maternity care
• social care
• health care/research
It is expected that the statutory guidance to relevant authorities will be laid before Parliament in Spring 2023.
The National Down Syndrome Policy Group (NDSPG) support people with Down syndrome to have a say in the formation of policy in matters that impact their lives. NDSPG supporting bodies include 39 national and local organisations including Mencap, Down Syndrome Education International, Positive About Down Syndrome (PADS).
The NDSPG is one of several organisations that will be involved with the open consultation.
The Department of Health and Social Care (DHSC) will facilitate the open consultation.
The consultation mandated by the Bill will inform the statutory guidance. This includes input by adults with Down Syndrome.
The Down Syndrome Association, who are committed to improving the quality of life for people who have Down syndrome, will be submitting their own response. You can find further information on their website:
Details on how to get involved with the DHSC consultation will shared once published.
What does this mean for forums?
- Forums should be aware of the Down Syndrome Bill and make their members aware of the proposed changes.
- Forums may wish to respond to the consultation on statutory guidance (when published) or share their views with the NNPCF Consultation & Policy Lead to inform the NNPCF response.
- Forums may wish to look in more detail at examples of good practice elsewhere and work with partners to develop a Down Syndrome pathway and improve local and practice and services.