Today is apparently Blue Monday. A named coined by Dr’s at Cardiff University to predict the day of the year where things are at their bleakest and most depressing.
Currently that is everyday for me. I’m sure that’s true of millions of disabled people and carers at the moment.
Last year was spent fighting for Emily. If I’m honest every year has been spent fighting for Emily since she was diagnosed at 3 with autism. The sad truth is that the fight for her was much easier when she was a disabled child than when she became a disabled adult. Our empathy, funding, services and protocols surrounding vulnerable children is clear. They may be limited but they are clear.
As a society however the rules change when these vulnerable children become vulnerable adults. The spotlight shone brightly on Winterbourne View. We were told things would change for the better. I believe that the intention is there for this to be true but as we know, intention and application are two very different things.
Responsibility and an interpretation of responsibility, are two very different things as well. It doesn’t matter how many people are reminded of their duty of care under the Care Act, it seems there is always a way to stipulate adherence to it, yet a departmental distance from it.
The threat we have lived under everyday for a year now is that Emily may be admitted to an assessment and treatment unit. This is a psychiatric hospital. I strongly believe and have had this this verified by professionals, that if Emily is placed there, she will never leave.
There is no clinical need for this to happen, but one based on a possibility that Emily’s current care package may break down, due to her behaviours which challenge. I’m told that if that were to happen, there is no other provider able to pick up Emily’s care.
Yesterday I learnt that the lead psychologist in Emily’s care has gone on long term sick leave. This is not their fault, but the system should be robust enough to continue seamlessly for Emily. I don’t have confidence that this will be the case. This person is co-ordinating everything. Problems are still ongoing but now, with no idea of who will pick this up or what will happen to all the outstanding issues, which I’m battling to resolve already, I now feel hopeless.
I’m at breaking point. The fight which consumes my days and torments my mind at night, is an ongoing one because I feel there remains a collective societal lack of knowledge and true understanding of what it means to be an adult with a learning disability.
Emily is tearful and anxious much of the time.
I’m including a portion of an email that I’ve just sent to everyone working with Emily. It’s a reflection of where I am and where Emily might end up through no fault of her own. I feel broken, hopeless and utterly desperate for my daughter. I don’t intend to make things any worse than they are but I have no idea what else to do. If you can circulate this, if you can help or know someone to send this to then please do.
It’s my message in a bottle that I’m throwing into the sea of the internet, in the hope that we can be rescued.