THE WIND BENEATH MY WINGS

My inspiration is my first ‘client’, Matthew. My son. Born 1994 with Marshall Smiths Syndrome. I learnt my ropes with him, I was an apprentice under his guidance. He taught me that we can all choose to live, no matter what our condition, that with a zest for life, the correct encouragement, realistic adaptations plus health and safety assessments, very little is impossible. If in doubt, I always ask myself ‘Would Matthew have a go’? He trusted me, trust me too.

AN ACHIEVEMENT

I believe, rightly or wrongly, that I played a hand in kick-starting the now prevalent Direct Payments option that Hertfordshire provides. In 2000, after frustrations of having up to 7 different carers a week coming to our home (note, not house), I concluded that it was neither a fair nor a dignified way for the county to meet Matthew’s needs. We had no say in who attended to him and had no idea who to expect on the doorstep each morning. Yes, we desperately needed the extra pair of hands but there had to be another way. It took me nearly one year to battle, sadly it was a battle, persistently with the authorities, to allow me to choose who, when and when Matthew had carers attend to him. Luckily for me, after checking the legality of my request, the authorities eventually agreed to my suggestions of having a separate bank account, allowing them access to see how I was spending the money and having Matthew’s staff undergo a CRB/DBS. Things are different and better now. I had to pay upfront and claim reimbursement and had to register and pay with a wages and income tax company to enable me to have the payslips necessary for the reimbursement. I am not arrogant enough to think it was all my doing. HOWEVER, I am confident that my unrelenting demands played a big part in accelerating the dignified way people access support these days.