Former minister Dr Liam Fox MP has today announced that he will introduce a “Down Syndrome Bill” to Parliament later this year.
Tommy Jessop, the actor with Down’s syndrome who played Terry Boyle in the BBC drama “Line of Duty”, has publicly backed the bill.
If made law, the Bill would establish a “Down Syndrome Act” and a national strategy to improve provision and outcomes for all those living with Down’s syndrome in the UK.
It would give similar recognition to people with Down’s syndrome to those granted to people with Autism through The Autism Act in 2009, which preceded the establishment of England’s national strategy to help meet the needs of adults with autistic spectrum conditions.
It would ensure that public bodies such as schools, NHS bodies, social care services, job centres, and local authorities have to meet the specific needs of people with Down’s syndrome by legally recognising them as a specific group, rather than ‘lumping them in’ with people with disabilities in general.
Under the draft laws released today, children with the genetic condition would be able to attend the school of their parents’ choice rather than automatically being sent to a special school, as all schools would be legally required to meet their needs by training more teachers to understand the condition and teach children with it. Currently only one in four children with Down’s syndrome attends a mainstream secondary school, compared to 71% of children diagnosed with autism spectrum conditions.
The National Down Syndrome Policy Group, in coalition with the All-Party Parliamentary Group for Down Syndrome, has been lobbying for the Act. They have released a film featuring trustees who have Down syndrome, highlighting some of the areas where they hope to see positive change in the future.
Fox said he is confident that the government will support the bill, as ministers have privately said they agree with the proposals.
He told “The Times” that his motivation to change the law was due to growing up next door to a boy who has the condition. His constituent assistant’s son also has Down’s syndrome and turned 18 this week.
He added: “Every so often you get the chance in politics to make meaningful change and that is what I intend to do”.
Jessop, the first ever professional actor with Down’s syndrome to play the lead in Hamlet, said he believed the bill would be “life-changing” for those with the condition.
“I welcome the Down Syndrome Bill,” he said. “We need a voice and a champion to make sure we have equal chances in life before and after we are born”.
“I am really pleased that Dr Liam Fox has heard our voice and is championing people living with Down syndrome”.
“This bill will be life-changing for people with Down syndrome in the UK. It will help us lead good, healthy, fulfilling lives and provide hope for everyone worldwide”.
“When I played Hamlet these words spoke powerfully: ‘We fools of nature are wondrous too.’ This bill will give us better chances in life so we can show you who we really can be and what we are capable of”.
It is now far more likely that people with Down’s syndrome will outlive their parents. Life expectancy for someone with the condition in the UK has increased by over fifty per cent to between 50 and 60 since the 1980s — the last time UK law in regards to people with Down’s syndrome was changed.
The new law would require councils to provide social care plans for adults with Down’s syndrome after their parents have died.
Fox said: “How do we avoid entirely predictable personal tragedies in the future? We’ve got a generation of people with Down’s syndrome who, for the first time, will outlive their parents — and that is a major worry for parents”.
“So the main thing I will have in this bill is that those who provide long-term care — particularly local authorities who are purchasing it — must take into account the needs of people with Down’s syndrome when they are shaping that provision, because what we simply cannot tolerate, and must not tolerate as a society, is where people who have spent their lives as part of a family find themselves institutionalised because their parents are no longer there”.
“It’s a shocking indictment of modern 21st-century society that that should ever happen, and the one thing I want to do with this bill is ensure that never happens in the UK”.
Ken Ross, a trustee for the National Down Syndrome Policy Group, added that the changes were also needed to reverse the incredibly low rate (around 6 per cent) of employment among adults with the condition.
Ross said: “We are excited that people with Down syndrome will be properly supported throughout their early life, with services specifically adapted to meet their needs and learning profile, so that they can progress easily to the workplace and enjoy their adult lives in the way that the majority of others already do”.
There are numerous anecdotal reports from women who were found to be pregnant with a child that had a genetic disability like Edwards’ syndrome, Down’s syndrome or Patau’s syndrome, and who were then pressured to have an abortion.
Meanwhile, the latest available figures show that 90% of children diagnosed with Down’s syndrome before birth are aborted. There were 3,083 disability-selective abortions in 2020. 693 of these unborn babies had Down’s syndrome, an increase of 6% from 656 in 2019.
The UN Committee on the Rights of Persons with Disabilities’ has made a key recommendation that the UK change its abortion law on disability so that it does not single out babies with disabilities for abortion, right up to the point of birth.
A spokesperson for Right To Life UK, Catherine Robinson, said: “This bill is long overdue, but it is incredible news for people with Down’s syndrome, their loved ones, and our society as a whole. I hope that Fox is correct in his assumption that the Government will back the Bill, and that people with Down’s syndrome in the UK will receive a higher standard of understanding from our public institutions. However, it is imperative that we also remove the legal discrimination against all persons with disabilities in our abortion laws, which permit abortion up to birth for babies likely to be born with a disability. It is also imperative that children and adults with any disability receive the same provisions that people with Down’s syndrome would if this Bill were passed”.