‘I was just in awe of the all people and the place’...
Ed from Leek goes to London to celebrate life changing legislation
A LEEK man has attended a reception to celebrate new legislation to make provision to meet the needs of people with Down Syndrome
Ed Daly attended the reception at Winfield House, Regent’s Park, London for the passing of the new Down Syndrome Act 2022.
This was at the invitation of the US Ambassador as well as Dr Liam Fox MP and the National Down Syndrome Policy Group (NDSPG).
Ed said: “I was just in awe of all the people and the place. Dr Liam Fox has done an amazing job to get new law that will help everyone with Down Syndrome, and Tommy Jessop gave a brilliant speech, the best.”
The Down Syndrome Act 2022 will address five key areas: healthcare, education, social care, employment and housing.
It requires the Secretary of State to give guidance to the relevant authorities on the appropriate steps they should take in order to meet the needs of people with Down Syndrome.
There will now be a consultation period where individuals and groups can inform the Government of lived experiences and research which will help to shape the statutory guidance. It is anticipated that the Act will come into force in early 2023.
When asked what the Act means for him, Ed said: “For me, I hope in the future to get some paid part time work, which would ideally be in conservation or horticulture. Also, I hope to be supported to live more independently.” Ed’s mum, Jane, accompanied Ed to the reception. She believes it is hugely important for young people with Down Syndrome to raise their own profile.
Jane said: “It was an absolute privilege to be amongst people with Down Syndrome who are acting as great ambassadors to the Government and the MPS who are leading in changing people’s attitudes. I’m so proud to see Ed in the crowd.”
Jane believes that the Act will empower families to face their failing local authorities who will now have to understand and address the specific needs of their local residents who have Down Syndrome, and willingly contribute to delivering appropriate provision.
She said: “We have had to fight for this for far too long and the battles have been particularly hard since Ed started on the transition to adulthood. We have a long way still to go but it’s a very exciting start; life changing.
“So many people with Down Syndrome have life stories that are not good reads. The Act means that their voices can no longer be ignored. Their specific needs and capabilities must be respected so that they have a chance to fulfil their potential like anyone else.”
Ed is a member of the Advisory Group of the NDSPG run by people with Down Syndrome. All adults with Down Syndrome are welcome to attend the online meetings with or without a supporter. The Advisory Group has a lot of work to do now making sure that the guidance is complete.
Further, as the statutory guidance under the Act develops, Ed and Jane are keen to use it to make a big difference to the lives of people with Down Syndrome living in the Staffordshire Moorlands.
For more information on the legislation and how to join with Ed and Jane in championing the Act, please contact on 07966 325266.
So many people with Down syndrome have life stories that are not good reads
Jane Daly