This study is the first piece of qualitative research undertaken into the experiences of LGBTQI+ disabled people using self-directed support. It was co-produced by the Social Care Institute of Excellence (SCIE), the University of Bristol, Stonewall and REGARD.
Self-Directed Support is a way of having more choice and control over our support. It means that we can use a Direct Payment, a Personal Budget or our own money to recruit employ our own support workers or PAs. We can choose people we feel comfortable with. LGBTQI+ Disabled People can benefit from having more choice and control over the people who support us.
Key Findings – Being LGBTQI+ and dealing with PAs
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( 1 ) Over 50% of those surveyed said that they never or only sometimes disclosed their sexual orientation or gender identity to their PAs who they paid to support them.
( 2 ) Less than one third said that they were ‘very comfortable’ talking about support needs pertaining to being LGBTQI+ with their PAs.
(3 ) More than a third said that they had experienced discrimination or received poor treatment from their PAs because of their sexual orientation or gender identity.
“If I had a copy of ‘Gay Times’ I would probably make an effort to make sure it wasn’t there… especially when you’ve got a new carer coming in… just in case they’re homophobic.”
“If I fire someone I’ve got to have an alternative before I can do that. You can’t just find people in two or three hours. It’s meant I’ve had to put up with more bad behaviour if I hadn’t had to think, ‘Well what’s the alternative?’”
Key Findings – Being LGBTQI+ and care needs assessments
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( 1 ) More than 90% said that their needs as a LGBTQI+ Disabled Person were either not considered at all or were only given some consideration when their needs were assessed or reviewed.
( 2 ) Less than a third said that they were comfortable talking about these needs with staff in their local authority.
( 3 ) Less than a third felt they had been discriminated against by their local authority on the grounds of the sexual orientation or gender identity.
“I do worry if a care manager was very religious or whatever that they may not give me a totally fair assessment if they’re judging my life or lifestyle.”
“If they had little made-up stories about a person, you know, like, ‘One of our clients, he’s gay….’, then I’d be okay, it’d make it safe to say something.”
Key Findings – Support with LGBTQI+ related activities
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( 1 ) 22% said their PAs did not support them to do any LGBTQI+ related ‘things’ (e.g. go to an event/bar, have help to maintain friendships and relationships).
( 2 ) Why not?: 40% said because they were not out to their PAs; 40% said they were not comfortable with their PAs helping with this; and 20% said that their PAs had refused to help with these type of activities.
Key Findings – Benefits of Self-Directed Support
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Having control over support arrangements was the most commonly-cited reason for preferring self-directed support, and interviewees gave many positive examples of the benefits of self-directed support.
“You have different people all the time, you’ve got strangers coming into your house. I wanted to be able to choose. It’s transformative if you get the right person.”
Key Findings – What could be improved?
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( 1 ) Most of the interviewees said that they would like more support i.e. an increase in funded hours. This was often for so-called, ‘social hours’, to go out, be with people and/or do activities and for some, to combat isolation.
“I would like more hours. I don’t really get to go out to places, you know to enjoy myself, like cinema or bowling.”
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( 2 ) A recurring theme in the data was people saying that it was difficult to recruit and retain good quality PAs; that there was sometimes a lack of guidance and support with recruitment processes; and that overall, more support and information about managing disagreement or conflict within support relationships/ arrangements would be helpful.
The findings of the report will be widely disseminated among the partner networks. For the first time it will provide policymakers with hard evidence of our experiences, things we have known about anecdotally in the past but have previously been unable to back up in a form that policymakers could use.
Along with the full report, further co-produced resources including two films and two SCIE ‘At a glance’ briefings can be found by following this link to the SCIE website
The film for LGBTQI people using self-directed support can be viewed here
Full Report: LGBTQI+ Disabled People using Self-Directed Support
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