LGBTQI+ Disabled People: social care

25 October 2017

More choice and control achieved but fears over prejudice and lack of person-centred care remain.

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

The most significant piece of research about LGBTQI+ disabled people's use of social care to be published.

Ju Gosling, Regard.

Until now, not much has been documented about the experiences of using self-directed social care support by LGBTQI+ Disabled People.

LGBTQI+ Disabled People say they have experienced prejudice and social isolation. They also say they are worried that if they come out to PAs / support workers or those that assess and review their support, then that support could be compromised. A new report, along with two films and two At a glance briefings, highlight, for the first time, some of the issues faced by LGBTQI+ Disabled People in England. They say that too often they have to make ‘bad bargains’ with PAs / support workers whereby they have (out of necessity) carried on with PA relationships even when there was an element of self-censorship or discrimination.

Quote from the report

A man who was not out to his family with whom he lived at the time, said that he had built up enough rapport and confidence with one support worker to come out: “...So I thought I would tell him about my sexuality and he went straight downstairs and told my mum. She was crying. She said to me, 'Is this true?' So I had to lie to my mum and say, 'I'm not gay.'”

LGBTQI+ Disabled People say there are many benefits to using Self Directed Support, such as having more choice and control over their care. But they say that this can be can be a challenge for a number of reasons. They fear coming out to PAs / support workers because 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; they have experienced prejudice; and they often feel isolated from the wider LGBTQI+ community.

The report and films have been produced by the University of Bristol, the Social Care Institute for Excellence, Regard and Stonewall. The report, briefings and films will be launched at an event today at the Coin Street conference centre.

At a glance briefings and films

Briefing: LGBTQI+ Disabled People using Self-Directed Support. This briefing provides information for LGBTQI+ Disabled People who are or wish to be in charge of their social care support and who employ personal assistants (PAs) or support workers.

Briefing: Working with LGBTQI+ Disabled People: top tips for personal assistants and support workers. This briefing provides information for personal assistants (PAs), support workers, social workers and other social care staff working with LGBTQI+ Disabled People.

Film one: Understanding self-directed support for LGBTQI+ Disabled People. This is a film for personal assistants and support workers. In the film, Rachel, a PA employer, talks about how until she had a PA, she would be stuck at home for long periods of time.

Film two: A film for personal assistants and support workers. In the film, John talks about how he has had positive experiences with the PA who he employs.

The research

In a survey, in-depth interviews and a focus group of LGBTQI+ Disabled People who use self-directed social care support, researchers 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 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.

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 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.

Professor David Abbott, Professor of Social Policy at the School for Policy Studies, University of Bristol, says:

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, says:

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.

Links to other organisations involved in the report, briefings and films

This independent research was funded by the National Institute for Health Research School for Social Care Research (NIHR SSCR). The views expressed here are those of the authors and not necessarily those of the NIHR SSCR, or the Department of Health, NIHR or NHS.

Notes to editors

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.

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