A bill which seeks to improve the lives of people with Down syndrome has cleared the UK House of Commons.
The Down syndrome Bill cleared all parliamentary hurdles as it received an unopposed and emotional third reading in the House on Friday.
Conservative former Cabinet minister Liam Fox stressed his bill is not about a “medical condition”, but people who “have a right to dignity and individuality and to make the choices for their own lives that we all take for granted”.
The bill will require the government to publish guidance on the specific needs of people with Down syndrome and how they should be met.
Authorities providing health, care, education and housing services in England must then act to deliver on these requirements.
With legal protections in place, it is hoped the bill will make it easier for people with Down syndrome and their families to secure the services they need and to challenge authorities not acting on their duties.
Due to an amendment at committee stage approved by the government, Dr Fox explained Parliament is “not only going to give rights” but “applicability and enforceability of those rights” due to the guidance being laid before Parliament.
“This is a bill that I think began with great intentions, but I think which ends now as a landmark bill,” said the MP for North Somerset during the third reading debate.
“It actually recognises that in the provision of services, whether they be in health or education, or in long-term care in this country, Parliament is not only going to give rights, it’s going to give applicability and enforceability of those rights in the systems that we have.
“I think that is a change in the whole way that we think about these kinds of pieces of legislation in this House.”
Speaking in support of the Bill, Conservative MP for Stroud Siobhan Baillie told the Commons about her 19-year-old nephew Rhys, describing him as the “light of every room he enters”.
“I have seen my little sister battle for the understanding about Down syndrome,” Ms Baillie told MPs.
After having to take interventions from other MPs as she began to cry, the Stroud MP continued: “I have seen her battle for the right to medical care for operations in a timely fashion. She has battled for education. She has battled for housing. She has battled to get landlords to take people with benefits. She has battled during the transition from raising a child to an adult.
“She has battled to get the council to complete a required assessment. She has battled with welfare assessment and DLA appeals. She has battled with endless application forms and then had to redo them because they are lost by various authorities and had to start all over again.”
Ms Baillie welcomed the bill, and added: “These problems have been over multiple governments. Parties of all political colours should hang our heads and also want to see improvements.”
Earlier during the debate, Conservative MP Gagan Mohindra representing South West Hertfordshire told the Commons he looks forward to the day when people with Down syndrome are “not getting named after their disability but for their ability”.
“There’s an article in today’s papers about a lady called Beth Matthews, who has achieved her life chances,” said Mr Mohindra.
“She’s a young lady, 20 years old, I believe. But the reason why it’s important, she’s now a model but she also happens to have the Down syndrome condition and actually, for me, that’s irrelevant, but the fact that people feel the need to show us a leading light, similarly you’ve had Tommy Jessop, who is the actor in Line of Duty, where we normalise people with whatever condition, whether it’s hidden or obvious, I think that’s a good thing, but I look forward to the day where they’re actually not getting named after their disability, they are just getting named after their ability.”
Confirming government backing, Health Minister Gillian Keegan, who has a nephew with the condition, said: “I feel really fortunate to be the responsible minister at the time this bill has been brought to Parliament and I wholeheartedly support it. The bill will be instrumental in improving the lives of people with Down syndrome by tackling inequalities in access to services.
“It is not right that such disparities exist and I have seen first-hand in my own family the challenges that people with Down syndrome can face in accessing the support they need.”
Labour also supported the proposals, which will undergo further scrutiny in the House of Lords at a later date.
