I have multiple disabilities causing complex needs and get both higher rate disability components. I have needed to use an Advocate to liaise and try and get help put in place and have been fighting for years someone asked if I really need the help then but it’s no reflection of my needs. The advocate has stopped working with me, I had them for a long time and they understood me very well but I don’t want to get another one and go through the process of getting to know each other all over again. I have finally potentially had help put in place, I’ve been offered a community care officer assistant and have been advised that it’s a chargeable service at the council. They do an affordability check and ask what benefits I am on and decide I can afford to pay for it with the disability payment but if I do that I can’t cover the other costs incurred by my disability if that makes sense. I’ve had this problem before where I was given an affordability check for outreach counselling and they wanted my entire care component. I also get universal credit can’t work for the unforseeable. I use the money to buy crafts, books and music which give me some quality of life with hobbies at home that isn’t just sitting infront of a tv or just existing staring at the wall. I don’t know if there’s a way around this
What were your dream names for your kids when you were growing up?
