Regard’s Response to the
Independence, Well-being and Choice Green Paper
Regard is the national organisation of disabled lesbians, gay men, bisexuals and transgendered people: otherwise referred to here as the disabled LGBT community. Regard works to highlight disability issues within the LGBT community and LGBT issues within the disability community, campaigns on issues affecting disabled LGBT people, and works to combat social isolation amongst its membership.
Regard supports the responses from the British Council of Disabled People (BCODP), the Trade Union Disability Alliance (TUDA) and the National Centre for Independent Living (NCIL). We wish to address our response specifically to social care provision as it affects the disabled LGBT community. We ask that the Government take the following issues into account when finalising its new policy and vision on social care.
Invisibility
Regard believes that, like everyone else, disabled people are entitled to explore and express their sexuality, to form relationships, to leave these when they wish to do so, and to make mistakes along the way. However, disabled people have traditionally been regarded as being asexual and genderless.
Since to be homosexual, bisexual or transgendered is regarded as being a primarily sexual identity, the disabled LGBT community has been largely invisible. For older disabled people this situation is compounded by the way in which all older people’s sexuality is generally ignored or considered inappropriate to mention (except as a symptom of ‘pathology’, for instance in dementia).
The needs of the LGBT community are therefore unrecognised within social care provision. Social care providers need to recognise that all disabled people have the right to express their sexuality and to form relationships, and providers need to cater for the needs of LGBT disabled people rather than assuming that all disabled people are heterosexual and have uniform needs.
Infantilisation
Disabled people, particularly non-verbal disabled people and people with learning difficulties, are stereotyped as being child-like and in need of protection. The misuse of the term ‘carer’ to cover social care workers adds to this distorted perception of disabled people.
Within the correct usage, ‘care workers’ provide care for children plus the very small minority of adults who are unable to direct their own lives, while ‘support workers’/’personal assistants’ work for disabled people who require support but can direct their own lives. ‘Carers’ provide unpaid care for children and those adults who are unable to direct their own lives; other unpaid workers provide support, not care, for disabled people who require this but who are unable to access adequate and appropriate social care services.
As a result of this infantilisation of disabled people, disabled LGBT people are being prevented from forming relationships because they are seen as being incapable of participating in an equal, non-abusive relationship, whether this is with a disabled or a non-disabled person. These attitudes affect both family and friends, and paid support workers.
For example, disabled LGBT people may be refused the support they need to attend LGBT activities, or to communicate and meet up with potential partners, because they are regarded as being vulnerable to abuse if they do so. And within formal care settings such as day centres and residential institutions, disabled LGBT people may actually be moved against their wishes in order to break up sexual relationships. The rights of all disabled LGBT people to form relationships, and their ability to do so, needs to be recognised within social care provision.
Homophobia and Transphobia
Disabled people are particularly vulnerable to the effects of homophobia and transphobia and are frequently the victims of harassment, abuse and violence. Disabled LGBT people need to be enabled to participate in the wider LGBT community in order to help to combat these effects, as well as to combat social exclusion more generally.
Older LGBT people report homophobic/transphobic attitudes in some other users, and sometimes in staff, of services and facilities designed to have a preventive effect maximising the health of older people. Their experiences deter them and create social exclusion. Evidence exists [Profiles of Prejudice, Stonewall, 2003] confirming the existence of these attitudes in significant percentages of the population of all ages.
Social care assessments need to recognise the need for disabled and older LGBT people to participate in community activities. They also need to recognise that LGBT community activities may take place outside of a disabled person’s immediate local area, and may therefore require lengthier periods of support than support with other leisure activities such as library or sports centre visits. Within institutions, disabled people need access to appropriate individual support to enable them to attend LGBT community activities.
We are particularly concerned that the Green Paper regards informal care from family and friends as the primary method of providing support to disabled people. It is difficult enough for disabled LGBT people to challenge homophobic/transphobic social care workers who refuse to support them in accessing LGBT community activities and in forming relationships. It is virtually impossible for disabled LGBT people to challenge a family member in this way.
Equally, many LGBT people do not come ‘out’ to their family until years after they begin to form sexual relationships and to participate in LGBT community activities. Some never come ‘out’ to their families, because they know that they will be rejected if they do so. Forcing disabled LGBT people to be dependent on their families for social care means that many will be denied all opportunities to express their sexuality and to form relationships.
Many older disabled LGBT people have, in any case, no family to support them, and many have been rejected by their families of origin. Yet funding to create new peer support systems for LGBT people is tremendously difficult to obtain, and projects are forced to compete for such small sources as exist. Social care policies should recognise the role of peer support services within social care provision.
Elder abuse has much in common with other kinds of abuse that disabled people experience, and it is currently the focus of concern within government at all levels, the voluntary sector, and older people’s movements. However, few strategies on elder abuse include in their definition of elder abuse the specific targeting of older and disabled people for homophobic/transphobic attack and other abuse.
Nor do most community safety initiatives concerned with homophobic/transphobic abuse adequately address the vulnerability of older, and disabled, LGBT people. In many areas concern about homophobic/transphobic attack centres on gay venues, whereas the home and its environs are often the site of attack for many disabled and older LGBT people.
Social care workers may also need support when working for people whose neighbours are abusive and homophobic/transphobic, but there is no mechanism for providing this at present. (This is also, of course, a problem for many disabled and older people from Black and Minority Ethnic communities.)
Other abuse
Disabled people are particularly vulnerable to abuse when they depend on others to meet their social care and other support needs. Disabled people are also unable to leave abusive relationships, and indeed are forced to collude in abusive relationships, when the abuser is their main source of support.
Abuse can be extremely subtle and hard to detect. For example, it can include withdrawal of medication, over-medication, withdrawal of mobility aids, refusal of help with toileting and washing, prevention of social contact, last-minute withdrawal of promised help with tasks such as shopping, and so on. Often abusers are highly respected for their ‘caring’ role, while their victims are seen as ‘burdens’. The vast majority of abuse against disabled people is therefore undetected.
The way in which social care and other services are delivered can increase disabled people’s vulnerability to abuse. Disabled people’s expertise on their needs and the best way in which to meet these is ignored within the current social care assessment system, increasing a sense of powerlessness and lack of control. Disabled people are also required to be entirely passive in order for social care tasks to be carried out within the time allotted by the local authority, further undermining their self-esteem and any sense of assertiveness.
(For example, local authorities commonly allot half an hour in the morning to get a disabled person out of bed, washed, dressed and breakfasted, and another half an hour in the evening to get a disabled person fed, undressed, washed and put to bed. These tasks can only be achieved in this time frame if the disabled person is completely passive in the process, as supporting a disabled person to carry out these tasks at their own pace, or carrying out these tasks under direction from the disabled person, takes far longer.)
Forcing disabled people to be dependent on family, partner and friends for support creates a climate where abuse will develop and flourish. It is inevitable that frustration and resentment will arise when unnatural demands are placed on relationships. It is also inevitable that people actively seeking an abusive relationship will target disabled people who are left vulnerable as a result of inadequate social care provision. The failure of both statutory and voluntary sector agencies to cater for disabled people seeking to escape domestic abuse means that many disabled people are left trapped in abusive relationships throughout their lifetime.
Shortfalls in social care services also create a climate where abuse flourishes. With the introduction of Fair Access to Care Services (FCAS) there has been a disturbing increase in the number of local authorities refusing to provide services such as shopping and cleaning, even when a disabled person is unable to carry out these tasks themselves and it is clear that no family support is available. This further exposes disabled people to abuse, with the need to seek informal voluntary help and/or to employ workers who operate outside of the supported direct payments system.
All disabled people need to receive adequate and appropriate social care that enables them to lead fully independent lives and to enter and leave relationships whenever they wish to do so. Social care needs to be delivered in such a way that self-esteem, self-respect and assertiveness are increased, not undermined. Increased vulnerability to abuse when social care needs are not met in full should be a factor in any risk assessment. Domestic abuse policies also need to take into account the needs of disabled people, and all provision for the victims of domestic abuse should include provision for disabled people within it.
Privacy
Everyone is entitled to privacy within their relationships. However, many social care agencies issue employment contracts that require social care workers to report any signs of sexual activity to their employer. This is highly intrusive and inappropriate, and should cease. Non-disabled people do not expect to have their relationships recorded unless they choose to enter a marriage or civil partnership contract; disabled people are entitled to privacy in their relationships as well.
Disabled people’s privacy is also invaded when disabled people are left dependent on family and friends for social care. Non-disabled people expect to be able to find partners and form relationships without the involvement of their family and friends; disabled people have the right to do this too.
Appropriate care
Disabled LGBT people have cultural needs in the same way that disabled people from minority ethnic backgrounds and other backgrounds have cultural needs. Social care needs to be appropriate in all circumstances. Disabled LGBT people will often prefer to be supported by other LGBT people from a similar cultural and ethnic background, and this should be respected. Receiving support from another LGBT person also helps to combat social isolation and exclusion from the wider LGBT community.
There has been a disturbing move away from local authorities employing specialist social care agencies for LGBT clients, replacing these with social care agencies that offer ‘the same service irrespective of sexuality or other cultural background’. Often clients are not even able to choose the gender of the person providing the care. This is completely inappropriate and a total misunderstanding of equality issues.
Disabled LGBT people’s sexuality, gender and cultural background must be respected, and services should be provided in a way that acknowledges these in full. We support Stonewall’s call to extend anti-discrimination legislation on the grounds of sexuality to cover goods and services providers as a matter of urgency.
The needs for support and personal assistance of older disabled LGBT people should be acknowledged in exactly the same way as it should be for younger people, in spite of the tendency for ‘two-tier’ provision (with separate ‘adult’ and ‘elderly’ services) which disadvantage older people. The common cultural expectations that older people are not sexually active, or are uniformly provided with ‘partners’ or ‘carers’ and do not need LGBT social support, must be challenged, as must the idea that local mainstream ‘elderly’ provision will be attractive or experienced as welcoming.
Local authorities also need to acknowledge that recruitment costs for LGBT workers may often be higher, for example because specialist publications and/or recruitment agencies will need to be used, and recognise this within the budget allocation for direct payments users.
In summary:
Regard Executive Committee, July 2005