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"I can’t do this all on my own"

Underpinning the key building blocks for taking up opportunities to build lives in communities, is the need for balancing family, peer and staff support. As one manager stated, “It’s always been about help--, making sure people are as independent as possible and achieving their potential, but getting the right support to do that.” (Sandra, Castle Hill Centre).

Most people with learning disabilities we spoke to have some support from family, including parents and siblings although this was very variable. For those who had one or more parents still alive, they did often provide significant support. There were a few instances though of people saying their parents were not supportive and that they held them back through a fear of various risks. While families can be important sources of support and guidance, relying solely on family caregivers has been shown to cause issues in terms of family strain and issues in developing independence. The research findings also suggest that family support no longer offers the safety net for ageing persons with learning disabilities as it did in the past. People with learning disabilities are increasingly outliving their parents.

Many disabled people face issues later as their parents become less capable in older age. One advocate, when asked who the most vulnerable people at risk of falling through the cracks were, said:

"It’s those people who have been more protected and supported by their families for a long time, and their parents are now at a stage and an age where they’re either not there anymore or they are unable to, and those are the people who are at most risk. I’ve come across several people who have never been diagnosed, lived with Mother, Mother protected them, Mother’s died. They’re wherever they are and then they’re picked up, self-neglecting, whatever else, so it gets to a crisis before they actually reach services." (Mary, Advocate)

The quote above illustrates the perils of relying solely on family caregivers and the costs of not being able to access these individuals being cared for and provide more independent living opportunities to them.

By contrast, those who had access to and had availed of opportunities for peer-support earlier in their life had built up much more resilience to these risks. We found that those people who demonstrated the most capacity to self-build their own community lives had done so through peer support opportunities gained through a self-advocacy group, a steering group, or a friendship group. These groups increased a person’s capacity to engage more in their community and live more independently. According to the same advocate:

"those people you meet over there [in the self-advocacy group], they know where to go if they think things aren’t as they should be. So they can come to us, they can self-refer to us, “Mary, could you help me please? I think I need a new assessment because I want to change my day services.” “I don’t think my direct payments are going right.” Whatever it is, they know where they can go." (Mary, Advocate)

Part of the key to successful self-building then is for those working in social care to encourage a balance between family and peer support. In our research, many of the support organisations we spoke to were trying to foster and facilitate peer support opportunities through paid staff facilitators. In other research, significant benefits can emerge when staff support people to develop circles of support.

Many of the participants themselves talked about the skills and learning they had acquired through peer support. Peer support can increase channels of obtaining information and accessing resources, and further generating mutual assistance and enjoying the forms of reciprocity that emerge in benefiting from each other.

Despite the significant benefits of peer support, almost all of our participants who were living independently still required some staff support in the form of a key worker though. Paid-staff support was typically by people to meet their personal care needs. Key workers typically offered help with meal planning, shopping, as well as pastoral support.

"So the support worker is Sarah, who’s helping me with--, she’s supporting me when I’m upset and I’m so happy I’ve got her ‘cause I can’t do this all on my own." (Sally)

Beyond these forms of paid-staff involvement, organisations were also keen to emphasise that they needed staff facilitators to help organise the peer-support activities that they offered. While people with learning disabilities were certainly becoming more involved in these organising roles, they did not run solely by themselves.

Finding the balance between family, peer and staff support is therefore crucial. Having access to all three can help provide stability and reinforce each other, whilst developing the means to enable people to become more independent and have networks in place to build confidence and capacity.

What learning is involved?

The learning involved here is experiential and communal. Working together people with learning disabilities, their families, allies and support organisations work through the challenges in this interpersonal part of self-building lives.

What more can be done?

Local authorities could recognise the mutually reinforcing nature of support provision from these different sources. While family members are often important sources of support, this is variable. Building up a network of peers, supported through the involvement of staff can give people more resilience and better opportunities to remain a part of their communities.