I’ve previously posted that I have the privilege to chair a non-profit organisation that seeks to engage with government on defining and shaping policy that has impact on the life of people with Down syndrome. It is a relatively new organisation, currently seeking charitable status, but in the short space of time it has existed our trustee group’s energy, commitment and passion for a common cause have combined to produce amazing results. We recently announced the launch of an All Party Parliamentary Group on Down Syndrome, bringing together over 40 MPs and Lords from across the political spectrum. This and the latest of the group’s achievements is a powerful indication of what happens when you get a bunch of tenacious individuals working together as one.
Today I am absolutely delighted to announce that Dr Liam Fox MP will be laying a Bill before Parliament that will become, in due course and with the support of MPs, the Down Syndrome Act. This unique piece of legislation will compel the government to review how policy decisions impact the lives of people with Down syndrome and create a strategy that addresses these issues across all aspects of life.
For too long the voice of the Down syndrome community has not been heard. The Down Syndrome Bill will enable engagement to secure and safeguard the rights and ambitions of these individuals Having lobbied hard for this opportunity, our group – the National Down Syndrome Policy Group (www.ndspg.org) will be fully behind Dr Liam Fox and the Down Syndrome Bill on its journey through Parliament, in line with our aim of raising the profile of issues affecting people with Down syndrome, their families and carers.
Dr Liam Fox MP said, “I am thrilled to bring forward a Bill to deal with the issues faced by those with Down syndrome. The full title is ‘A Bill to make provision about meeting the needs of persons with Down syndrome; to place a duty on local authorities to assess the likely social care needs of persons with Down syndrome and plan provision accordingly; and for connected purposes’.”
“My aim is to deal with three main areas. The first is to de-stigmatise Down syndrome and to re-educate both the public and professionals about the advances, including in life expectancy, that have occurred in recent decades. The second is to ensure that current provision of services is improved, whether provided by health, education or local services, by ensuring that providers give due consideration to those with Down syndrome when designing service provision. The third is to look ahead and deal with future issues, such as long-term care, in an era where, for the first time, many of those with Down syndrome will outlive their parents. By giving due thought to the issues today we can prevent avoidable human tragedies in the future.”
Typically, within these posts I try and weave some personal reflections on challenges within the work setting, but today I shall just celebrate a massive milestone in getting this Bill before Parliament. As we like do within our trustee meetings – celebrate, pause and reflect – and now the work begins!
[i] Great to see the coverage in today’s Times