Change of direction at last!
We got it! A new direction for my autistic brother. Funding has been approved! We have waited years for him to get the help he so badly needed but he never scored highly enough on the social care questionnaire. Just one point off would mean he didn’t ‘qualify’ for a social worker. That one point could have been because he answered the question literally, all because the person asking the questions didn’t understand Autism.
We all know that mental health is really on the bottom of the pile where funding is concerned, but it’s not until you are in the system that you realise where the problems lie. This isn’t my field of expertise, and it’s been a steep learning curve! After years of mental health issues, problems with the police, housing, and neighbours, my brother had to become so unwell with psychosis, that he was eventually admitted to hospital. We had great concerns that he would just ‘be returned’ to his original housing once he was stable, and the downward spiral would begin again. I was so lucky to be in the right place at the right time and managed to have him moved to a special ward for rehabilitation. During this time I decided to write a little about this journey. (Ha! For those of you who know me well and have read my book, will know how much that word irritates me!) I felt it was time that people saw how difficult it is, when you don’t know what you are doing and have no idea how the system works.
Thankfully, I know some amazing people.
I was guided in the right direction, and was given some helpful tips. I also drew upon all my own teachings and worked with manifesting and gratitude. Sometimes when you take a step sideways at look at everything like a movie, you see things differently. That’s being mindful. In the moment. Not panicking – or trying not to! People say things happen for a reason. This isn’t always easy to see at the time. Like the time I arrived at the ward to take him out and he wasn’t there. It meant I had chance to talk to the clinical lead who was also the deputy manager. She was concerned over the issues I had raised and asked me to email everything that was going wrong, and what they needed to do to push it forwards. If he had been there, I’d never have had that conversation. She became my main point of contact and was doing everything she could to move things forward. After all, they could give his bed to 20 other people…. Not all at once, obviously! If he had been there, I wouldn’t have met her, and who knows where we would be now?
The system is flawed.
The reason the system seems to fall down, is that the ward is run by the NHS, and he needed to be moved to Adult Social Care. The team on the ward didn’t know how to apply for funding, they were just doing their job, which was looking after him. This is where the system is a nightmare. Continual breakdowns in communication and days spent pinging emails around while most people are job sharing, on holiday, or off shift. The process of applying for funding is so antiquated. We needed to go through ‘proper channels’ by getting a social worker to put in the application.
A social worker who had never been to a funding panel before. He was only brought in when my brother was very unwell, and knows nothing about his extensive history, despite a file as heavy as two phone books being available to him. He actually told me, ‘This is a very lengthy process, and can take months.’ Well, it would have taken months if I had just left it to him. Thankfully, I’m like a dog with a bone!
Things I have learnt:
Be patient, but not complacent.
Use the ‘cc’ option in emails. Even ‘bcc’ is a good one to keep in your back pocket! Sneaky, but necessary! Keep a paper trail so everyone knows that everyone else has been told.
Be firm, but always polite.
Always show your gratitude for the work people do. Even if you think they could do more, assume they are actually doing their best. They may be restricted by the system above them.
Give people time to get back to you, but always give them a time scale, and always follow up your emails.
Don’t take things personally – especially when you are accused of micro-managing!
Don’t panic. It’s not that easy as we are all human! It’s very easy to let emotions run high when social workers only work three days a week and you can’t go above their heads because that’s how it works. When the social worker is away, a whole week goes by with nothing being done. At all. No replies to emails, and no ‘out of office’ reply. Now THAT annoys the hell out of me!
Let’s not dwell on those things anymore.
He is now moving to a flat that has 24 hour care, and his social worker won’t be needed. We are now beginning the next phase of my brothers life. He still needs to ‘let go’ of his old flat, but that we will deal with that in the next couple of weeks.
Incidentally, it is interesting that there is a full moon tomorrow night. A full moon where you can show gratitude for things you manifested in the new moon 14 days ago. A moon where you can release the old and welcome in the new. How perfectly synchronistical is that?
Now we have a small bedsit to paint, and a sofa to order. The paper work is being sorted, and I am brimming with gratitude to all the people who have helped and supported us since back in the spring when this all happened. You know who you are!