Rt Hon. Dr Liam Fox MPFormer Secretary of State for Defence
This week I was honoured to speak at the United Nations in New York to celebrate the 12th World Down Syndrome Day.
It was a crucial opportunity to raise awareness of Down syndrome across the world; to come together and share experience and expertise.
This year’s theme, “With us, not for us,” thinks about legal capacity and supported decision making, both of which are incredibly important.
We all expect to be able to make decisions about our lives, from where we live and who we live with, to what we study and where we work.
It is absolutely right that people with Down syndrome are involved in all decisions that affect their lives. We must all take action to make sure this happens in practice. It can make all the difference when we get it right.
A different path
When a child is born with an extra copy of their 21st chromosome, they enter a different path in life from the rest of the population. Inevitably, their families, too, will face different challenges. They will come in the form of medical problems, educational needs and long-term care challenges.
I believe that every individual with Down syndrome has the same right to life, quality of life, dignity and independence that the rest of us take for granted.
The UK has a longstanding tradition of ensuring the rights and liberties of disabled people are protected.
In 2021, I introduced to Parliament a Down Syndrome Bill, which I am delighted to say became law in April 2022.
The Down Syndrome Act is a world first and I am very proud of this achievement. My interest in this is personal, political and professional – as a Member of Parliament, as a doctor, and as someone who grew up next door to a boy with Down syndrome.
I have seen clearly that there is so much more to do to support people with Down syndrome to have that independence of decision making. Much of the impetus for change has been driven by the huge improvement in life expectancy.
When I was born, the life expectancy of someone with Down syndrome was 13 years. By the time I became a junior doctor, it was 30 years. Today, it is 58 years, and many people with Down syndrome are now living into their 70s. That makes a huge difference, because they are the first generation who will outlive their parents.
The Act legislates for people with Down syndrome. It requires the Government in England to produce Down syndrome specific guidance relating to health, social care, education and housing services.
Public authorities (such as hospitals, schools, or social care providers) cannot ignore this guidance when commissioning and delivering services.
The guidance will set out what the unique needs of people with Down syndrome are, and what public authorities should be doing to ensure the support needs of people with Down syndrome are met to enable them to live fulfilling lives.
We will share best practice examples to ensure professionals understand how to support people with Down syndrome to make decisions about the things that are most important to them.
Spirit of World Down Syndrome Day
In the spirit of “With us not for us,” we will work closely with people with Down syndrome, families and carers, as well as organisations who support them, to develop the guidance and make sure it is fit for purpose.
There are now so many tools available which can help people with Down syndrome express their views.
We have no excuse not to involve them in decisions about their lives. Let us hope that what we said at the UN is heeded the world over.