Page 18 - Community Living Magazine 35-3

down syndrome bill
Debate over Down syndrome law: giving one group

priority or positive consequences for all?

Proposed legislation to benefit people with Down syndrome ‘Policy should address the needs of people
has divided opinion, with views strongly held. Simon Jarrett with Down syndrome as a distinct group’
Fionn Crombie Angus (with support from
outlines the plans and self-advocates explain both sides Jonathan Angus)

am one of five founding officers with
law to ensure people with Down The bill has caused controversy. Down syndrome of the National Down
syndrome have their health, care Supporters argue that legislation I yndrome Policy Group (NFSPG). As the
S
A and housing needs met throughout specifically related to people with Down title founding officer suggests, we were
life is working its way through parliament. syndrome is required because they have there at the beginning: not an
It could become law early next year. specific needs. afterthought, as some tick-box parody of
The Down Syndrome Bill is a private They hope that, if the bill becomes law, real inclusion.
member’s bill – it is proposed and it will have positive results for other Those of us who are chromosomally
sponsored by an individual MP, in this case people with learning disabilities. abundant make up roughly one-third of
former GP and conservative Liam Fox. Opponents argue that the law should our leadership committee.
Its sponsor in the House of Lords is not prioritise particular groups but entitle We helped to clarify what we are
Baroness Sheila Hollins, a crossbench all people with learning disabilities to seeking and strategised how to achieve it.
(politically unaffiliated) peer involved in have a better life. I can assure you, our voices have been
campaigning work on behalf of people There has been some heated debate kept front and centre, and the policy
with learning disabilities. online and offline, including some abuse group’s process and flow has been
and trolling. frequently adapted to suit all members.
Community Living invited self-advocates It was my suggestion that our group’s
The critical issue – if and when from both sides of the debate to explain slogan should be Changing the Narrative
the law is passed – will be the their thoughts and perspectives. because I love stories, and the life stories
Each was keen to emphasise that they
nature of the guidance respected the views of the other and of too many people with Down syndrome
are poorly written, or dull, or tragic.
wished to be part of a respectful and Aiming for greater inclusivity, we five
civilised debate. recently formed an advisory group,
The bill is short and states its aim is to Both agreed to contribute only on that inviting adults with Down syndrome from
“make provision about meeting the needs basis, and emphasised that far more across the UK to tell us what is good and
of persons with Down syndrome”. unites than divides them. what is challenging about their lives.
It will place a duty on the secretary of l The Down Syndrome Bill can be We also teach them about the bill,
state for health and social care to give downloaded from: https://bills. and about our roles liaising with
guidance to the NHS and local authorities parliament.uk/bills/2899 government because, while self-advocacy
“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”.
These authorities would be obliged to
“have due regard” to the guidance.
In essence, the government will require
those that provide education, health, care
and housing to assess people with Down
syndrome and aim to meet their needs,
and show they have taken government
guidance into account when they do so.
The critical issue – if and when the
law is passed – will be the nature of
the guidance. Number10gov/Flickr CC BY-NC 2.0; Fiona Yaron-Field/Wellcome Collection CC BY 4.0
Although private members’ bills usually
fail to become law, the Down Syndrome
Bill is likely to be successful as it has
government support.
In November, the bill was approved by
MPs at its first stage and is now going
through the House of Lords. If approved
by both the House of Commons and the MP Liam Fox says the law is needed because people with Down’s syndrome are starting to outlive
Lords, it could be enacted in early 2023. their parents and placing them in “inappropriate institutions” would be a “scandal”

18 Vol 35 No 3 | Spring 2022 Community Living www.cl-initiatives.co.uk