Stroud MP Siobhan Baillie has welcomed the Down Syndrome Bill passing both Houses of Parliament and becoming law but warned more is needed to help families.
Ms Baillie spoke movingly during the Bill’s debate to highlight the battles and issues that all disabled people and their families face based on her family experiences and constituency casework.
The landmark legislation is due to receive Royal Assent in the next few days. Dr Liam Fox MP introduced it as a Private Member’s Bill before it gained government and cross-party support.
Her nephew Rhys has Down Syndrome and she told MPs: “I have seen my little sister battle for understanding about Down syndrome. I have seen her battle for the right to medical care for operations in a timely fashion.
“She has battled for education. She has battled for housing. She has battled to get landlords to take people with benefits. She has battled during the transition from Rhys being a child to an adult, and she is still doing that. She has battled to get the council to complete the required assessment. She has battled with the welfare system and disability living allowance appeals. She has battled with endless application forms and then had to re-do them because they have been lost by various authorities and had to start all over again. She has battled during covid.”
Speaking today, Siobhan said: “I am really pleased this Act has happened but there is still a lot of work to do for families.
“We have some way to go judging from my own family’s experience and from my constituency postbag to ensure those who have disabled family members get the help and support they need and deserve.
“This is however a landmark piece of legislation that will do much good for people with Down Syndrome but we must not think the job is done for them.
“I would like to thank Liam Fox and National Down Syndrome Policy Group for their sterling work on getting this bill into law. The Government’s support was crucial and the cross-party consensus was really positive.
“The key now is the public consultation – once Royal Assent is given – to inform development of the necessary guidance around the Down Syndrome Act and that it is fit for purpose.
“I will encourage people to take part in the consultation. This will help make sure this Act is effective and works.”
The Act places a duty on English local authorities to assess the likely social care needs of persons with Down syndrome and plan provision to help support them.
It will require the Secretary of State to publish guidance to public bodies to ensure that they are clear on how they should meet the needs of people with Down Syndrome.
Best practice across health, education, social care and housing will be set out giving practical advice on how the appropriate steps can be taken to meet the needs of those with Down Syndrome when planning, designing and delivering services.
It is expected that necessary guidance around the law will be developed within a year after the passing of the Act following the public consultation.