Video of me telling my story to help with fund raising for my respite care break. Do you know how could I overcome this and force them to give me a personal budget/direct payment including my respite care as a part of my package?
My respite care will not be funded by social care, who would like me to go to a respite care home instead. A care home is an inadequate solution for the disability I live with- functional neurological disorder, as well as, cerebral palsy. I have tried it in the past and instead of giving me and my family a break, it had a terrible impact on my mental health. That meant my family was even more stressed. It is mentally destroying to go there because there are people with severe disabilities who cannot communicate at all. This feels like a punishment and mentally I can’t cope in that environment. It also makes my FND worse. Social care told me they’d never fund a personal budget for my respite care/ direct payment, which I have for the rest of my support. They continue refusing to put my respite care element in my direct payment/personal budget package. They will only pay for me to go to a respite care home of their choice and brokerage are saying I do not have a say in this; and that they will find one that says they can meet my needs. I do not see how they will do that, as there is no training for FND that I can even send my own staff on. My own staff on the other hand know me well and know how and when to call my doctor and nurses.
Same Difference 