The system’s not about people, it’s about money – #100days100stories

When Kenneth moved into a care home, he imagined gaining independence and the chance to learn new skills. What he got was a very different situation. Kenneth shares his story as part of our 100 days, 100 stories campaign.

Kenneth wearing a baseball cap smiling at the cameraI left home when I was 19. Like anyone else, I wanted independence and my own space. I wanted to choose what time to get up in the morning, what to have for lunch – simple stuff like that.

I moved into a bungalow with three other young disabled people. We had staff on site 24 hours a day to support us. I thought it would be great, I really did. My dream was to make friends and have a social life. Maybe go on holiday with my new housemates.

After a few weeks, I realised something didn’t feel right. For a start, everyone was in bed by 8.30pm. Why would you go to bed so early every night? It turned out my new housemates had no choice – they were being ‘put’ to bed early, even if they didn’t want to go.

Nobody was listening

I wasn’t getting the support I needed either. I wanted to cook my own dinners and to get out more in my car, but that wasn’t happening. I felt powerless because nobody was listening to me.

The days were long. I work so I could get out of the house but the others spent a lot of time watching TV. I remember coming home to find one of my friends, a girl who uses a wheelchair, sitting at the kitchen table with nothing to do. She’d just been left there on her own. Another time I came home to find two of my housemates with their wheelchairs facing the wall. I don’t know how long they had been like that – hours maybe.

A modern day institution?

When people think about institutions, they imagine these big old buildings with lots of residents sitting around doing nothing. But we were living in a brand new, purpose built bungalow and it was just as bad. It’s not how it looks on the outside; it’s how it’s run on the inside that matters.

Despite my mum and social worker getting involved, nothing changed at that place and I moved out. Now I live in another bungalow with 24-hour support. It’s not perfect but it’s a lot better.

In the future, I’d like to live on my own and have a personalised budget so I can choose the care I need. I’d like live-in support workers so I can do what I want, when I want. Personalised budgets are available where I live but disabled people are still getting stuck in homes because it’s the cheaper option.

Less choice over our lives

The system is so wrong. It’s not about people – it’s about money. Our social care and benefits have been slashed which means young people like me have little choice over our lives. Through my job at Change.org, I met Norman Lamb MP, the Minister of State for Care and Support. As I told him about my experiences, I started crying. I couldn’t help it. I hope what I told him has got through. Something has to change.

Find out how you can get involved in our 100 days, 100 stories campaign and read the rest of our stories so far. 

One thought on “The system’s not about people, it’s about money – #100days100stories”

  1. Kenneth I feel like crying today. I cried last week. Why? No one is listening. I agree with everything you say. I do think it is still possible to share a house and have a personalised budget and that even a house on your own may still have some of the restrictions you are finding so difficult. Just keep telling everyone what you want. You are not asking for a lot.

    The title of your blog says it all. I am helping my son look for a permanent home with some other parents. As luck would have it he is living in a residential home that has good values and good staff but he cannot stay. I am not defending residential homes – just saying what counts is how good staff are, whether people understand person centred support and how to express it so that legally people can secure a budget to deliver the support.

    We have asked a big national charity to look at a care package for our son and another one to look at housing. Today we were told that the housing charity doesn’t do housing with ceiling hoists or extra space for the equipment our young people need. That’s the house.

    Last Friday I spoke to another charity about a care package – they were gobsmacked when I suggested we needed to have basic things like protective gloves and extra toilet roll for staff included in the package. I didn’t even get as far as staying up late. The 2 charities above are not Scope.

    I do hope people in Scope who can help us will read this blog and help us find a solution. Sometimes things are more complicated than the easy words we read in Strategies and Missions. Making good person centred care happen is really difficult and there are many layers.

    Thank you for your blog Kenneth – I hope some of the Executive Directors of Scope will read this and help in a practical way. Helen

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