How people with learning disabilities experience Self-directed Support

To mark Scottish Learning Disability Week 2021, Hannah looks at some findings from ALLIANCE-SDSS research on SDS, ‘My Support My Choice'.

The Scottish Commission for People with Learning Disabilities (SCLD) estimate that there are more than 125,000 people in Scotland who have learning/intellectual disabilities (this link will take you away from our website). This year’s Scottish Learning Disability Week focuses on “relationships” and celebrates the importance of the people that matter in the lives of people with learning/intellectual disabilities.

SCLD summarise the importance of relationships as follows:

“We know that getting out and socialising can sometimes be more difficult for people with learning disabilities. This can lead to fewer opportunities to meet people and form relationships – something we all should have an equal opportunity to do.”

This was among the findings in research by the ALLIANCE and our partners Self Directed Support Scotland called “My Support My Choice: People’s Experiences of Self-directed Support in Scotland” (MSMC). Through this project we heard about the experiences of 124 people with learning disabilities, and our report makes specific recommendations on how to improve people’s experiences of SDS. An Easy Read version of this report is available on our website.

Overall, we found that most people with learning disabilities reported that SDS improved their experiences of social care. People discussed a variety of ways that SDS has improved their family life and relationships. However, they also highlighted that social workers should not assume that family members will provide unpaid care, or that people with learning disabilities wish to live with family members and friends.

Many people with learning disabilities we heard from said it is important to include support for social and community engagement in their SDS packages. They also spoke about the importance of good relationships with social workers and with care workers – and the problems that come from poor or inaccessible communication. One person said that:

“[SDS] has been the best decision. I now have a lot more freedom to go out and about. My PAs are lovely, and they understand my needs and how to help me.”

Others reflected on the value of peer networks:

“It’s nice to have others you can talk to, people that are in the same situation as you, and maybe have a bit more experience with things like Self-directed [Support], or other, housing, or whatever issues. And you can, I don’t know, sort of help each other out. That peer support is huge, because being a disabled person, you’re often really isolated. So the peer support gives you a lot more sort of freedom, and opportunities, and things. And it can be little things like meeting up in your own time to go for a coffee, or go to the cinema, or pub, or whatever – things that […] I never would have thought of doing a year ago.”

People with learning disabilities highlighted that good, consistent, trusting relationships with social workers and clear lines of communication are all essential for positive and effective experiences of SDS.

Many interviewees described positive and favourable experiences of assessments and reviews with social work professionals. Others outlined concerns around not receiving full answers to questions raised during assessments, or not receiving accessible information. Several people shared troubling stories of being treated with disrespect by social work or social care professionals.

One person with learning disabilities related difficulties communicating effectively with their social worker. They felt that their social worker gave them enough information about SDS, but was poor at listening:

“[They] put words into my mouth. [They] thought I wasn’t capable to choose what I wanted [to choose] and what outcomes I wanted. And I said, ‘No, I can choose what I want, I’ve got a voice. Why are you putting things into my mouth?’ So, that was the difficult part.”

When asked what is needed to stop this practice, the interviewee outlined the importance of allowing plenty of time for discussion and supported decision making (rather than social workers making decisions for people):

“Just be with the person and go through the complete assessment. If people struggle then yes, I can understand that [social workers guiding a decision]. But if you are capable of saying what you want to do with that budget and what outcomes you need, then that is completely different – you can do that! I was really shocked.”

Some people talked about the positive impact of trusted support workers, and how much good support had improved their lives, although several people had difficulties finding and retaining personal assistants (PAs) and care workers that were suitable for their needs.

One person talked about support workers building up good, trusting relationships with service users, but that this can create different problems with boundaries – even with good intentions:

“And staff forget. And how I say that is because one of them has offered to give me a cuddle. And I’m thinking, ‘in your professional role that is not allowed because I’m not allowed to touch you.’ […] I did say to my support staff, ‘the only person that gets to do that is my mum.’ And she went, ‘that’s the best cuddle that you can ever receive.’”

In the above example, the interviewee appropriately diffused the situation. The interviewee had a team of social care workers with whom they were comfortable, but being able to trust care workers to respect professional boundaries was understandably important for them.

One troubling pattern that was raised by some people with learning disabilities during our research was that people were being asked to share their support (typically for social activities or completing tasks such as weekly shopping) with another person with learning disabilities – who they did not necessarily know or have any desire to socialise with. One person stated that they like the additional company “sometimes”, but that they “don’t like it all the time, because sometimes you want your own space”.

We believe that people have the right to form their own social relationships and friendships with people – and, separately, to have appropriate social care support.

There’s a lot more information about people with learning disabilities’ experiences of SDS in the My Support My Choice reports, including how people find out about SDS and how much choice and control they have over their options and support. We’ve made several recommendations, including that professionals should be trained in supported decision making to help reduce the number of cases where they choose SDS options and/or who manages personal budgets instead of the service user. We also recommend that that focused efforts are required to ensure people with learning disabilities are aware of – and can access – independent advocacy and support services to help support their decision making.

#LDWeekScot2021

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