Down’s syndrome bill could be world’s first, says former cabinet minister

A former cabinet minister is hoping that his bill aimed at improving services for people with Down’s syndrome will be the first such legislation in the world.

Dr Liam Fox, a former defence secretary, told a fringe meeting at this week’s Conservative party conference in Manchester that his bill would address the problems people with Down’s syndrome have in accessing education, health and social services.

He drew up the private members’ bill after meeting Annabel Tall, who stood for the Conservative party at the 2019 general election in Bath, and has a son, Freddie, with Down’s syndrome.

Fox told the meeting, organised by the Conservative Disability Group: “Annabel’s son Freddie had a number of problems accessing the level of care you would expect would be available in a place like north Somerset, the 18^th wealthiest constituency in Britain in the 21^st century, but it wasn’t.

“There are perfectly preventable tragedies that we can avert by doing something now.”

The bill has three simple clauses, and would force education, health and local authorities to take people with Down’s syndrome into account when providing education, health and care services.

Fox told the meeting: “The very first reaction from government at all levels was, we don’t need this legislation because we’re doing all these things already.

“And my retort was, ‘If you’re doing them all already why would you worry about the legislation?’”

He added: “It means then that if services are not provided, then there is a legislative mechanism for redress. It is a foot on the ladder legislatively, which I think is important.”

He said they had chosen people with Down’s syndrome to be the subject of the bill because they all had an “absolutely clear diagnosis”, which meant their rights would be “watertight”.

He added: “It sets a precedent that can be followed later on in other areas. If we can get a foothold in this, and it creates a precedent, others can follow.”

If the bill is approved by both Houses of Parliament, he said, it would make Britain the first country to introduce such legislation for people with Down’s syndrome.

Fox said he had spoken to Boris Johnson, the prime minister, shortly before the meeting, and he had been unaware of the sharp increase in life expectancy – from about 13-15 years to about 60 years of age – for people with Down’s syndrome in the last 60 years, which Johnson told him was “a tremendous testament to what we are actually able to do in healthcare in the UK”.

Fox said he had told Johnson that he would surely therefore want to make the same kind of improvements in social care and education services for people with Down’s syndrome.

Ismail Kaji, a parliamentary officer with the disability charity Mencap, spoke at the meeting about his experience of discrimination in employment as someone with a learning difficulty, before he joined Mencap, and how the Access to Work programme had supported him in his current job.

He said: “I am passionate about inclusion… people should be treated fairly and equally.

“Unfortunately, for people with a learning disability, this is not happening in many areas of life.”

Tall also told the meeting that she was “passionate about inclusion” and pointed to “the difficulty in the lack of provision for planning for adults with Down’s syndrome”.

She said: “The huge advantage of the bill… is it will allow us to avert what is very easily foreseeable disaster for many families.”

Picture: Liam Fox (left), Annabel Tall and Ismail Kaji

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