Ben sitting on a chair looking into the camera

I’ve wanted to live independently for a long time – #100days100stories

Ben wants to live in his own home, like other young people. Despite being in work and finding a flat, he can’t move as he’s still struggling to get the council and other agencies to work together. Today Scope launches a report into how joined-up services can make a difference to disabled people. Read Ben’s story in the next of our 100 days 100 stories campaign

I live with my parents – I always have apart from the few years I was at college. I have wanted to live independently for a long time. I’ve spoken to my social workers about this repeatedly.

Getting the right support

I was on the council’s housing list for about 12 years and in 2013 I finally found a flat. I contacted social services and asked how I could change my support. I’d tried doing it before I found my flat, but they said “you can’t arrange your support until you find somewhere to live.” Eventually they assessed me and came up with a care package that was just utterly ridiculous. They were only going to fund an hour in the morning to get me up – nothing during the day at weekends, nothing in the evenings and nothing overnight.

So lots of arguments ensued. The council wouldn’t help me. They shunted me onto the NHS. The NHS turned me down for continuing healthcare. Now they’ve changed their mind, but I still don’t know when I’m going to be able to move in. I’ve been paying for a flat for over a year that I haven’t even slept in.

The attitude was “well, this is the support you’ve got and you’ve just got to make do – get on with it.” And when you’re in chronic pain, the last thing you want to be doing is spending your time on the phone arguing that you’re in chronic pain.

Different people phone up and ask exactly the same question that someone asked you three weeks ago. And it’s like – talk to each other! I shouldn’t be sitting there and telling person A that person B has already come and done the assessment. As the service user, that’s not my responsibility.

We need joined-up services

I’m now taking anti-depressants. I was off work with depression, I’ve nearly lost my job. I’ve ended a relationship as a result. I’ve had screaming rows with my parents because I was so stressed.

If I’d known what it would do, I wouldn’t ever have started down the road of independent living. I can absolutely see why so many disabled people end up in residential care or remain living with their parents.

I never thought living independently would be this hard in a million years.

Find out more about our 100 days, 100 stories campaign and read the rest of the stories so far.

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