Hello, I am Ali Toutounchi, a founding Trustee of the newly established “Where I Want to Live” charity.
My wife and I have a 33 year old son, Ben, who has learning and physical disabilities. Ben is a very happy young man living with us in our house in Buckinghamshire.
The early years of Ben’s life was a constant battle with his illness and complex medical condition. As his health stabilised with the invaluable help of medical professionals at Great Ormond Street Hospital and with the passage of time, we then faced the challenge of finding suitable schooling for him. We had to move house a number of times to accommodate his schooling needs.
Our perseverance in helping him to develop his cognitive ability has meant that, by adulthood, he was able to decide that he wanted to carry on living with us. To be honest, we were delighted and relieved to hear this as we had no idea of how to go about finding a suitable place for him to live. The experience had taught us that this was not going to be easy.
Living at home with us as an adult also has had its own challenges; how do we persist with his education to the best of his ability? How do we ensure he has a social life with people of his own age? How do we organise help with his care? How best to adapt the house to make it wheelchair friendly? How do we ensure he will have privacy if and when he wants it? What about transport? What about funding? ….
Of course, there are pockets of support available through social services, local and health authorities but, unfortunately, these are not joined up. In fact, finding what help or services are available can, in itself, be very challenging. We have been fortunate to have the resources, background and my wife’s uncompromising commitment and determination to organise a good package of help and facilities at home for Ben. Even then, it took us a long time to get there. I am conscious that for many people this would be a daunting if not an impossible task.
So when Roberto asked me to help setting up the “Where I Want to Live” charity, I could not wait to get started. There is a lot to do and we need your help to speed up the development of the charity. We have identified the key areas where we specifically need your help. You can find these on the charity’s website www.whereiwanttolive.co.uk. Please have a look and let’s us know if you would like to join us on the mission to give young adults with learning disabilities choice and voice on how and where they want to live.