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Exploring learning disabilities: supporting belonging
Exploring learning disabilities: supporting belonging

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3 Change and no change for families

In practice, families, mothers in particular, have always been the main providers of care for people with learning disabilities. In the late 1960s, roughly half of adults with learning disabilities lived with their families (Walmsley, 2006). Recent estimates suggest the current figure is 36% in England (Public Health England, 2016), but in Wales approximately half of people with learning disabilities continue to live in the family home.

It is not a surprise that this is the case. Very often people with learning disabilities do not get enough support through social services, and families frequently step in to fill the gap. But how does this feel?

Activity 3 Change and no change

Timing: Allow about 10 minutes

Read Sue Wilson’s account of her life with her children, James and Jennie.

Note down what Sue says about the help received from social services.

Family life

After he [James] was born, I knew that my marriage was very unhappy, but I knew that I could not face life as a single parent with one disabled child, so I made a conscious decision to have another child. I felt it was important for James to have at least one brother or sister, to have some sort of normal life. When I was a single parent with them, I think it was easier having two children than one.

When James and Jennie were small, it was very difficult to cope. I had a twin buggy that I used to have given to me regularly by social services. It would only last a few months and James would break it and they’d send me another one. He must have been in a pushchair until he was well over five or six. So Jennie was walking and running long before he was, and she’s two years younger. She was out of nappies before him and talking. But she still had to get strapped in the twin buggy next to James because I couldn’t cope with them.

I think it’s been quite hard for Jennie. I think she’s suffered quite a bit of neglect: her needs have had to come second to James’s a lot of the time. It’s been hard for my younger son [Joel] as well, particularly when Joel has had to look after James, helping me to bring him up. He has been able to do that for him for a long time. I think James finds that hard.

We had no help from social services. I tried to get help but he was so violent, he really used to punch Jennie hard for no reason, his aggression was directed at Jennie. He grew from five foot two to six foot two in twelve months, so he had all that testosterone flowing round his bloodstream, he didn’t know what to do with his anger. At that point, that was when I felt I couldn’t cope any longer. Jennie was subjected to tremendous amounts of violence, and I tried to get respite care. We tried to get some sort of placement for him; we tried everything, and we got nothing.

(Rolph et al., 2005)
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Sue got some practical support when James was young (in the form of a twin buggy provided by Social Services). But at the point when the family really needed help – when James became quite violent during adolescence – they received no support at all.

Sue is not alone in feeling abandoned by social services. Jan Walmsley, one of the course authors, quotes many similar instances in a chapter on families’ experience of social work (2019).

It is understandable that social workers prioritise people in immediate need, not those who appear to be happily managing in the family home. However, the results can be traumatic, particularly when parents die after a lifetime of caring.

I met Sam (not his real name) in the course of research into supported living in a London borough. He was in his early 60s. He seemed sad. He tore at his shirt when with me. Staff explained that he had come into the house after his mum had been taken ill two years earlier. While she was still alive his sister would come to take him to visit his mum at weekends. He still packed his case on a Friday, and waited at the door. But his sister never came. The staff did not know whether he understood that mum was dead. They did not know where mum was buried. He had not been to the funeral because his sister thought it would upset him. His sister had not been in contact since their mother had died. They did not know how to contact her.

(Walmsley, 2019)

This story is not unique. It is hard for most people when parents die. How much more so, if you have spent your whole life with them until late middle age. This is compounded by a reluctance to talk about death in case it is upsetting for the person.