Down Syndrome Act Consultation

Hello, my name is Nino Genua, I am 24 years old and a proud Ambassador for WCAT.

I am a member of the National Down syndrome Policy Group who recently were successful in getting the Down syndrome Act passed in Parliament. This historic Act was one of the final ones our Queen actually signed before her death.

This week I attended (with mum as my chaperone) an important meeting in Westminster to talk about my experiences, good and bad, in Education, Healthcare, Social Services and Employment to Civil Servants who are responsible for drafting the guidelines for the Act going forward. As individuals and as a group we ensured that our views, opinions, advice and suggestions as people with Down syndrome are included in the consultation and in turn implemented nationwide in the Down syndrome Act. After all this act is for us and who knows better than us how we want to live our lives, what we need to support with in our lives and how the Government, Local Authorities and our own communities can best allow us safe, purposeful and equitable lives.

I felt that in Healthcare all medical professionals should have training in basic Makaton and wear communication fobs like staff at WPS to make communication easier for anyone with Down syndrome or a learning difficulty.

I want my Direct Payments to be used for things that I want to do in my life, be more flexible in how I can use them and for my mum to not have to defend the reasons every year for them to continue.

I also want to have my choice in who I live with (my friends, not strangers) and where I live, the area and type of support I will receive.

I want to keep the same Social Worker (mine is brilliant) who knows me and my situation well.

In education I want everyone to keep safe, be able to go to a school or college in their own community or away from home if they want to. I want more schools like Warmley Park School (my old school) – best school for me ever. I want more choices of courses at Colleges that I am interested in, that support my passions and dreams for my future and that utilise my strengths (for me that is sport and I had to leave education because there were no sport related courses for me to access!)

I have volunteer jobs which I do love, but would like to get paid like everyone else. I would like a choice to do a job I enjoy and am good at, but if I need support to do that job then that could happen too. I have lots of things I can do and enjoy working as part of a team. Everyone can work if they want to, some people just need some help.

I hope the Down syndrome Act will give everyone with Down syndrome, their families, parents and carers a more equal and positive future. I enjoy my role in this group and being able to let everyone hear what I think and am proud of myself for having a full and active life which I love.

Thank you for reading my news and you too can have your say in the consultation at: