Someone you don’t know walks into your house, up your stairs and into your bedroom! Is it a burglar? Most people would be horrified, but for many this is exactly what happens in homes up and down the country every day. It happens to people who need care and support; it happened to my mother when she came home from a care home following a broken leg and onset of dementia. Our local authority assessed my mother and then organised her care. The care she received was disjointed and inconsistent, the carers that came often didn’t know my mother’s name, and she was often forgotten completely with no explanation, so I asked my mother’s social worker for a direct payment. I have a son, Alexander, who has a diagnosis of autism and a learning disability who has a personal budget and employs his own staff, prior to receiving a direct payment and having a personal budget he too was given a one-size-fits-all service. This support was also inconsistent and often meant that there would be a number of different and new people turning up at our house each week to support him. The condition of autism needs routine and generally what would happen was Alexander would go into his room crying and hide, and the people who turned up to support him would have to leave. As in my mother’s situation, the service was causing more stress and difficulties than if we didn’t have the service at all, it really wasn’t working.
My mother’s social worker was really unhappy about our request for a direct payment and told me quite clearly that they didn’t work for older people and questioned my motive for even asking, the difference in culture, knowledge, and understanding about personal budgets between the learning disability team and older adults was unbelievable, however this didn’t stop us, we explained that it was my mother’s right to have a personal budget and after much fighting and firmness mum was offered a direct payment and we began employing our own staff
By choosing and employing our own staff we are able to keep consistency and reliability in both Alexander’s and my mother’s personal assistants (PA). We have had the same personal assistants (PA) for Alexander for the last eight years and can plan things successfully around his scheduled support. It is a lot less stressful as we know Alexander and mum are getting good quality support and person centred care and that they are both happy. My mother has been successfully using a direct payment for the last 2 years, she loves the people who support her and they love her, she is involved with their worlds just as she is part of theirs. Mum will often ask her PA’s to bring their dogs for a visit as she misses having a pet. We have had the odd hiccup but there is always a reason and apology.