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LGBTQI+ Disabled People speak out about their experiences of using self-directed social care support

Press release issued: 24 October 2017

New research shows LGBTQI+ Disabled People sometimes have to make ‘bad bargains’ with the people who support them.

Until now, not much has been documented about the experiences of using self-directed social care support by LGBTQI+ Disabled People. A new report released today however highlights that whilst there are many benefits to using Self Directed Support it can present a challenge for a number of reasons.

LGBTQI+ Disabled People worry about coming out to PAs/support workers because they fear their care might be jeopardised. They say that when care needs are being assessed and reviewed there is a lack of attention to sexual orientation and gender identity. They also say that they can experience social isolation; that they have experienced prejudice; and often feel isolated from the wider LGBTQI+ community.

The research produced by the University of Bristol, the Social Care Institute for Excellence, Regard and Stonewall found:

  • More than half of those surveyed said that they never or only sometimes disclosed their sexual orientation or gender identity to the Personal Assistants who they paid to support them
  • More than a third of those surveyed said that they had experienced discrimination or received poor treatment from their PAs because of their sexual orientation or gender identity
  • More than 90% of those surveyed 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.

Social isolation is also a big issue. When asked about getting support to do LGBTQI+ 'things' (e.g. go to an event/bar, have help to have sex with self or others) 22% said that their PAs did not help them with any of these activities.

One interviewee said; "I need people working for me who can handle queers coming in and out of the house, who can handle maybe that one of my friends who used to be a girl is now a guy this week, who can handle going out to protests with me, who can handle turning up at LGBTQI+ events with me."

Benefits of Self Directed Support

Having control over support arrangements is the most commonly cited reason in the report for preferring Self Directed Support. Interviewees gave many positive examples of the benefits of Self Directed Support. Previous experiences with agency staff who changed has frequently often led people to opt for Self Directed Support as they want to be in control of who comes into their homes.

‘Bad bargains’

The study demonstrates however that the reality of choice and control for LGBTQI+ Disabled People using self-directed social care support varies greatly. In more instances than not, those in the study had reservations about being open with PAs and staff about their sexual orientation or gender identity; they had experienced direct and overt discrimination from some PAs or support workers; they had made ‘bad-bargains’ whereby they (out of necessity) carried on with PA relationships even when there was an elements of self-censorship or negative attitudes.

"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?'” (quote from the report)

Professor David Abbott, Professor of Social Policy at the School for Policy Studies, said; "Self-directed social care support continues to provide opportunities for LGBTQI+ Disabled People to exercise choice and control over the support that they get. When support from PAs really meets the needs of LGBTQI+ Disabled People, people in our study talked about the positive impact on identity, inclusion and belonging. But our collaborative research also highlights the barriers that people faced and the lack of routine attention being paid to their human and legal rights."

Dr Ju Gosling, a Regard Co-Chair and user of Self Directed Support in the London Borough of Newham, added; "This is the most significant piece of research about LGBTQI+ Disabled People's use of self-directed social care ever to be published. We finally have evidence about the barriers which disabled LGBTQI+ Disabled People face in applying for and managing social care support, and about the positive impact on their lives that good quality self-directed support can make. The research is particularly significant because the findings are being disseminated through the partners' networks, so these will reach researchers, policy makers and social care workers as well as the disabled and LGBTQI+ communities. There are also films and printed briefings for Disabled People and the PAs who provide their support, aimed at increasing confidence and improving practice."

To view the report, at-a-glance briefings and the films created as a result of the research, visit: www.scie.org.uk/lgbtqi/disabled-people/

Further information

LGBTQI+ stands for Lesbian, Gay, Bisexual, Transgender, Queer, Questioning and Intersex +

Self Directed Support. Self Directed Support is a way for Disabled People to have more choice and control over their support. Disabled People are allocated a budget with which they can purchase their support. This budget might be given as a Direct Payment into their bank account or Personal Budget retained by the local authority. Some people are self-funders: they pay for their support out of their own pocket.

Links to other organisations involved in the report and films:

Regard

Stonewall

National Institute for Health Research School for Social Care Research

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