I usually like to start the week on a light hearted, leisurely and lovely vibe. Unfortunately there's an ongoing problem that has become too frustrating to ignore. The topic of care!
Ever since I was born I've not been able to walk. Moreover I've always needed help to turn at night, get dressed, use the toilet, go in the shower, cook food, and so on. My mum and dad did this until I was 19, as well as some of the amazing assistants at school.
When I finally went to university in Coventry I was provided with a budget from my Local Authority. It's known as a Direct Payment. I have a separate bank account for the funds, and employ the care services relevant for my needs. Independently. So at university the funds ensured I had a team of people providing 24/7 care.
It was scary. It was nerve wrecking. It was necessary. University opened up the world to me. I studied interesting things, met people from around the world, learned to drive, partied hard, and graduated into a job and a new chapter in London.
When I was living in London, I had more responsibility with my Personal Care Assistants (PA's). In Coventry the university did a lot of the actual recruitment and training. Now it was on me. However I managed and my time in London was amazing too.
More recently I've moved back to my home town in Cambridgeshire. It's understandably a different job market. However it's becoming concerning how little supply of good PA's there are. The agencies seem to cater more for older people, the websites like Gumtree give little return on the advertisement cost, and all my friends with a disability are in the same boat (so word of mouth with them isn't possible).
As I mentioned, this problem isn't only for me. My friends in the area are struggling too. One friend is a high flying professional commuting to London. He's fearful of losing his job if he can't find the right care support. Furthermore my grandparents also complain about the quality and reliability of their agency for my Nanna.
Zooming out further still we hear stories about disabled people in Southampton 'qualifying' to go into residential homes. Residential homes!? Can you imagine? Being a young adult like me, full of life, full of dreams, wanting to contribute to society -- being put in a home...
This article by Scope explains the number of people the general care crisis effects nationwide, and how economically the cuts in funding are more damaging for society.
I'm beyond politics after Brexit. I feel disempowered and despondent. However I do believe in people. Everyday people like you and me. So my plea to you is to understand this situation (if you don't already). After all, this can effect anybody any day.
Let's blog, tweet, talk, write, phone and generally communicate to our councillors and MP's. Eventually with enough noise, the government will have to act.
Their argument has been money. However when we look at the government's spending decisions, we know there is money. It just needs to be politically useful. So let's make our nations care crisis known to everyone.
Here's my parting story. My best friend from university lives in Manchester. He's 34. Like me he enjoys football, music, volunteering and working. He currently has quick calls for food, and must go to bed at 8pm. All because of his minimal care funding and the care agency prices.
At 34 years would you want to go to bed at 8pm? Would you want to be told when to eat your dinner? No. Me neither.
Please share this. Please raise all the awareness you can.
After all.
I care. You care. We all need to care...
Martyn Sibley
CEO and Co-Founder Disability Horizons
Co-Founder Disability Academy
Founder Disability United
Co-Founder Accomable