Hello I am Nino. I am 25 years old. I have Mosaic Down syndrome which only 1 to 2 percent of people with Down Syndrome actually have. I have a very busy, active & good life. I am a model, a Community Football Coach for Bristol City Robins Foundation, a trainee baker at Step & Stone bakery in Knowle and I am a Volunteer Youth Worker for the charity called Face.
I am an Ambassador for the charity Wouldn’t Change A Thing, and I am involved in the Co-Production Group for Bristol City Council. I am also a member of The National Down Syndrome Policy Group. Our Down Syndrome Act was one of the last Acts that Queen Elizabeth signed before her death.
I love sport and fitness and I am a Special Olympic Swimmer with The Bristol Sharks and train with them weekly. I am a goalkeeper for Keynsham Mencap Football Club and for Bristol City Down Syndrome FC. I love going to the gym several times a week with my Personal Trainer Dean Fitton. I also go twice a week to the sauna and steam room at Hengrove Leisure Centre. I’ve made a good friendship group there. I love watching Eastenders, playing FIFA on my PlayStation, singing, going out with my friends, going out to restaurants and going on holiday.
I have had Direct payments since a I was 14 years old. At first it was only a few hours a week and I went to my Personal Assistant’s house where we did cooking, life skills & socialising with her family. I really enjoyed it. I even slept over when Mum had to go into hospital once. As I’ve got older my Mum has had to ask for more support hours as both my support needs have increased and our family situation changed. Throughout the last 11 years the money I got from Direct Payments has helped my Mum employ Personal Assistants to support my care and support needs at home and in my community. During Covid, when it was hard to access the community I used my Direct Payment to buy a new iPad and laptop. It has paid for a 2 night break away with my bakery placement Step and Stone. The break was my first time away from Mum and sister Lia in over 10 years.
At present my Direct Payments are being used to pay for another 2 day break away with Step And Stone, gym membership and PA hours weekly to meet my needs which includes 2 days placement at Step and Stone bakery and a drop-in community centre that I will go to soon at the Hive in Kingswood. Direct Payments are positive for me and they help along with lots of other things for me to have a good life. I get chances to do things and buy items because of them which I could not afford to pay for myself if I didn’t have them. I get support for my mental and physical health with them. I can live more independently with them. I get breaks away with my friends and I have learnt new skills from my PA’s. I have fun with my PA’s and I can be active in my local community.
There are some negatives that Mum and me have experienced with Direct Payments. Lots of pressure and stress on Mum as an employer. But WECIL Direct Payment Support does help her with this. Recently my sister left her role as my PA to start a new job and I wanted a particular person to take her place and be my PA as it was important for me to have someone I wanted, someone I knew, and who knew me, and I felt could keep me safe, knows about my medical issues, and vulnerable and capable I am.
We are a small family unit of just 3 and I didn’t want to be with strangers as we have had a lot of trauma in the last 2 years and I wanted to make my own choices. But when Mum asked the local authority for this we were refused. No at the Council asked me about it, or spoke to me or met me to tell me the reasons why not. They told Mum to make a complaint. Mum is still trying to do this for me. Mum says it’s always a big battle with Direct Payments but she never gives up.
Having Direct Payments does help to fund the things I want to do in my daily life. It can and should be used for how I want to live a safe, healthy, purposeful life. Direct Payments can be a positive choice for many people. But, I don’t always feel my choice and my voice are heard, not asked for considered or accepted by the people who make decisions about which way my life path could go and they don’t even talk to me face to face.
I would like to say that my Social Worker has been with me for over 5 years and she has always asked my opinion, listened to me and made me feel part of decisions made for me. But she is not the one who says yes or no to how I use my Direct Payments – it’s her managers, who don’t know me at all other than what they read about me. I will miss her a lot now I’ve been signed to the Over 25 team and she won’t be my Social Worker any more.
With all the support I get from my mum, my sister and WECIL I am more than capable of making good choices, having my decisions about my life considered, be allowed to have a say in how and what I need to use my Direct Payments for that will lead to my best life outcomes.
Thank you for listening to my journey with Direct Payments.
Nino
