Running A Home
"Joan my care worker helps with managing my tenancy and with meals for the week"
Running a home is part of self-building. Most of the people we spoke to lived in the community, either in their own rented house or with one or both of their parents. The rented house was usually a social housing flat rented from the local authority or an assured tenancy with a disability housing provider.
Some support to run a home was still necessary for a lot of people. But it was not always readily available, and in most cases it was time restricted; people often had to wait to see a care manager or support worker to get a problem addressed. Others had to rely on help from siblings. Mason talked about the help he got from his sister. She came to his house every Friday to help with meal preparation and the laundry.
With support hours being cut back, some of the people we spoke to ended up having to spend lots of time being stuck at home, watching TV. Paul told us that staff ‘used to spend quite a lot of time with us lot, they used to take us out everywhere. That's a bit disappointing now because they tell us all to be independent. And I think that's wrong.'
These challenges can mean that parents are sometimes unwilling to give their adult son or daughter the chance to move out and get their own place. Sarah, who still lives at home but wants to move out, said that her parents told her about the skills and the money that would be needed for her to do this:
"I told Mum last week I want to move out. She told me it would be too much for me. I need to look after myself first. Because I don't know how to clean the bathroom, and Mum told me I had to learn how to do it… I'll do the washing but I need to learn how to iron my clothes… She told me like rent would be too much, the TV license would be too much. I want internet, that would cost more." (Sarah)
While Sarah's story shows the challenges of running a home, we did hear positive stories from others who had learnt these daily living skills – and were living more independently. Later in Sarah's story, she said that she was allowed to stay in her Mum's house while she was away on holiday. She had a very good awareness of the risks around the hob stove and of what to do to take care of herself (call her Gran or her boyfriend).
People were very happy with the opportunity to run a home. They often liked sharing stories of the things they were able to do in the home. For example, Belinda told us,' I know how to do the washing and hang the washing, and hoover my room, tidy up. I need to learn how to clean the bathroom'.
Having a house that allowed people to do these things, rather than support staff doing it for the person, was very important to people. It allowed the person to build their skills and confidence.
One person who had some mobility issues, talked about her support worker who came five hours a week. The support worker helped with meal preparation, shopping and cooking.
These examples show what can be possible once enough support is made available. Without this support, people can be left failing to manage and end up being stuck at home.
What learning is involved?
People with learning disabilities who were learning how to live independently were often putting into practice cooking or life skills that they learned in school or college or from their families. This learning was becoming more real for them. They and their allies were learning about how to manage risks. Learning in the home was more isolated and so the people who supported them provided a social link as well as skills coaching.
What more can be done?
While local authority and housing associations have done a lot to provide opportunities for people to get tenancies and to offer life skills, this is under threat with cuts to social care. This is an area where advocacy groups and allies may want to organise campaigns. There is a gap for community initiatives to develop ways of supporting skills development in running a home that are more communal, like neighbourhood schemes; people in the study valued these where they did exist.
