Portsmouth Down Syndrome Association is celebrating after MP Liam Fox champions cause and puts forward bill to parliament

A DOWN Syndrome association is celebrating after an MP decided to champion their cause and will be announcing a new bill in parliament on Wednesday.
Max Ross, son of Rachael RossMax Ross, son of Rachael Ross
Max Ross, son of Rachael Ross

Portsmouth Down Syndrome Association said the announcement will be ‘huge for the down syndrome community’ and a ‘world first’ - as well as being ‘long overdue’.

Taking up the fight is MP, Dr Liam Fox, who chose the association’s bill over thousands of others. He was selected in a ballot of MPs to introduce a bill on a subject of his choice before opting for the Down Syndrome Bill.

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PDSA has been working with Dr Fox and his team for the past two weeks and has written the draft bill for consideration.

Rachel Ross 
Picture : Habibur RahmanRachel Ross 
Picture : Habibur Rahman
Rachel Ross Picture : Habibur Rahman
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If successful, it will lead to the establishment of a Down Syndrome Act and a national strategy to improve provision and outcomes for all those living with Down Syndrome in the UK. It will include maternity care, education, health, social care and employment.

The Autism Act became law in 2009 preceded the establishment of the national strategy to help meet the needs of adults with autistic spectrum conditions in England. But the Down Syndrome Act will go further, identifying needs in all areas, for all individuals with Down Syndrome across the whole of the UK.

Rachael Ross MBE, chair of Portsmouth Down Syndrome Association, who is also a trustee for the National Down Syndrome Policy Group and mother to Max Ross who has the condition, was delighted with the announcement.

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She said: ‘Life expectancy for people with Down Syndrome and the way society now views individuals has improved over the past few years, but there is a disparity in services, education, health provision and social care, and employment.

‘Opportunities remain severely limited, and outdated regulations have not kept pace. Change is long overdue. We are excited that these and other issues will be addressed in The Down Syndrome Act if it is voted through by MPs.’

Ken Ross, vice-chair of the association, added: ‘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.’

Dr Liam Fox MP said: ‘I am thrilled to bring forward a bill to deal with the issues faced by those with Down Syndrome.

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‘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.’

A message from the Editor, Mark Waldron

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