Sexual Health For People With Learning Disabilities
This leaflet is about people with learning disabilities and their sexual health. While there is considerable legislation concerned with disability from the 1970 Social Services Act to the 1995 Disability Discrimination Act and beyond, it is not always clear that the needs of this user group are being addressed in appropriate ways. This is because there is a lack of research into how this user group live their lives and how they feel about life and sexuality.
Legislation and Anti-Oppressive Practice
Under the terms of the NHS and Community Care Act of 1990 social services have a duty to make an assessment of need to any person in their area who may have need of their services. With regard to people with physical or learning disabilities the department also has a duty to find out about such people in their area and to offer an assessment of need even if that has not been requested. The social worker must take account of the 1998 Human Rights Act when dealing with anyone. It is illegal for social workers to discriminate against people or hinder their access to services on any basis. A social workers should act in the best interests of their clients, the service users, and engage in anti-discriminatory and anti-oppressive practice.
Anti-oppressive practice can involve the social worker attempting to take care over the way in which he/she uses language. In order to fully engage in such practice a social worker would need to take care that in dealing with service users who may have difficulty in communicating their needs the social worker does not end up imposing their own agenda on the service user. When it comes to people with learning disabilities here is a need for different models and levels of participation depending on the service user’s circumstances. Participation empowers some service users while others may not be able to be truly involved at any recognisable level without the intervention of a third person – an advocate. The agency for mental health MIND suggests that many people with learning or mental health difficulties should have an advocate who is impartial and who can inform them what is available in terms of services and support and who will promote their best interests as service users. Those who are able to engage with the process often go on to promote the rights of other service users.
The service user movement has been a driving force in the struggle for people with mental health problems or learning difficulties’ entitlement to live as ordinary a way of life as they can (Carr, 2004). People with learning difficulties may have multiple and complex needs, nevertheless under the 1998 Human Rights Act, they are entitled to be treated with dignity and local authorities have a duty to abide by the requirements of this Act (Moore, 2002). Nevertheless there are areas where the Act is sometimes ignored and this is most apparent when it comes to the sexual health of people with learning disabilities.
Learning Disabilities and Sexual Health
There has been very little research into the lives of people with learning disabilities. The first of its kind was a government survey of 2,898 people which was carried out between June 2003 and October 2004. The report dealt with people with learning disabilities (to what extent they were learning disabled is not always defined) between the ages of 16 and 91. The report found the following:
- 45% of the people interviewed were under the age of 30
- 6% were from minority ethnic communities.
- 92% of all people with learning difficulties who took part in the study were single and 7% of these had children but only half that number looked after their children themselves.
- 7% either lived alone or with a partner.
There is an even greater dearth of information when it comes to the sexual health of people with learning difficulties. In fact media reports suggest that many people with learning difficulties are actively discouraged from engaging in what most people regard as a healthy sex life. There have even been instances where family members have tried to have girls with learning disabilities sterilised so that they could not bear children. A (2006) report from the University of Ulster Out of the Shadows, found that the sexual health of people with learning disabilities was all too often ignored. This is because family members and professionals do not want to acknowledge that this user group has such needs. The report found that:
- People with learning disabilities want to have relationships and express fears of being lonely. But the feel over-protected by professionals and family carers. Consequently there are few opportunities to develop relationships and meet new people.
- Some family carers want their child to have the same rights as everyone else. But they feel embarrassed to talk about sex with their children and are concerned for their safety. Feeling unsupported and isolated stops them from raising these issues in the home.
- Professionals and front line staff are aware that the issues around sex and sexuality are not being addressed. However they are inhibited by being under resourced, under trained, and at times restricted by a lack of clear guidelines and policies to support them (http://news.ulster.ac.uk/releases/2006/2892.html).
Clearly insufficient attention is being paid to what this group of service users actually want. People are embarrassed by the fact that people with learning difficulties may have the same hopes, fears, and aspirations as everyone else. Clearly there is a need for more research and for education so that a greater understanding of people with learning disabilities and their needs is actually met.
Further information on people with learning disabilities and their needs can be found at the following websites:
http://www.lancaster.ac.uk/fass/ihr/index.htm website concerned with the inclusion of adults and young people with learning disabilities in all areas of life.
http://www.inspiredservices.org.uk/ website about community living, when it may be necessary and how it is meant to empower people.
http://www.ndt.org.uk/ website that campaigns for inclusion of people with learning disabilities at all levels of ordinary life http://www.dh.gov.uk/en/Publicationsandstatistics/Surveys/Othersurveys/Generalsurveys/DH_4081207.Government survey
The agency called Age Concern is concerned that the rights of older people often get overlooked. This is particularly the case where the person is either unable or unwilling to speak for themselves. Thus Age Concern maintains that older people need advocates (a disinterested third party) to put their case when the rights of an older person are being ignored or overlooked. Since the publication of the National Service Framework for Older People in 2000 there has been a directive for more advocacy when it comes to addressing the needs of older people and this move that has been welcomed by Age Concern.
Advocacy is about protecting the rights of people as human beings and making sure that their wishes are taken into account when decisions are being made that affect what may happen to them. Advocacy therefore, is meant to empower those people who may have the least power in society. There are those who maintain that there should be specialist advocacy with regard to the problems of age. Service user participation involves rights and responsibilities on behalf of both the service user and a service provider. When it comes to older people who may be confused about what is happening, or who refuse to become involved in the process then a definition of rights and responsibilities is problematic because without equal cooperation it is difficult to find a way of ensuring that these are fulfilled.
At the very least it has to be acknowledged that everyone has the right to be protected from abuse and to be treated with respect. The aim of good advocacy is to ensure that older people are aware that the local authority has a duty of care with regard to their needs. Advocates also try to ensure that older people have an understanding of what to ask for and what to expect when it comes to support and services. When this is possible it enables older people to exercise their rights as citizens, however, some elderly people may have no idea what is going on and may be confused by the whole process. In cases like this an advocate would look at the older person’s circumstances and needs, as well as listening to the carer’s input, and would then put forward a case for their care and ask for an assessment. This is not, however, a guarantee that the person will receive residential care, however much a family might want it.
A social worker would listen to what the family and perhaps the advocate had to say and would then ask what provisions were currently in place, whether these were provided by social services or by the family. Once they had assessed the situation the information would be given to a care manager who would decide what could be offered (Moore, 2002). In some cases this would be residential care.
As people grow older they can develop fears that they did not have before. Many older people, for example, are afraid to leave their homes for fear of being attacked, and numbers of them are also afraid of being attacked in their own home. However, figures from the British Crime Survey 2001, tend to suggest that the likelihood of being a victim of crime decreases with age. Despite this, many elderly people live in fear of being burgled or attacked in their homes by a stranger. Yet the figures support the idea that this fear is largely unfounded the burglary figures for 2001 yield the following information:
- In 1000 households of people aged between 16 and 24 17.6% had been burgled
- In 1000 households with residents of 75 and over only 2% were burgled
Despite these figures many elderly people are haunted by the fear that they are not safe on the streets and may not be safe in their own home. At the same time some media reports tend to suggest that older people are safer in their own homes than they might be if they went into residential care. Older people may not always be willing to go into residential care but an assessment may be asked for by other family members or by carers who are feeling the strain of looking after a demanding elderly relative. Some older people, however, may have become so frightened in their own homes that they want to go into residential care.
Care and Abuse
Despite the fact that some elderly people feel that they will be safer in residential accommodation there are factors which suggest this feeling may be misplaced. The marketisation of care, and the growth of private care homes means that there is some evidence which supports the view that the elderly may be more at risk of abuse of their rights and criminal assault in residential settings than in their own home (Ward et al, 1986). The 1990 NHS and Community Care Act, and the introduction of market forces into the care sector has meant that many former council run residences are now privately owned and run for a profit. This is the case even if the person does go into a council run home, they or their family members will be expected to make some contribution to the cost (Kerr et al, 2005).Even if people are in council run homes then they or their families are expected to make at least some contribution to the cost of their care. The shift to a mixed economy of care means that some carers have little or no personal care about the job they are doing and this can lead to older people being at risk of neglect and abuse. There have been plenty of media reports of neglect and abuse in residential care where older people’s human rights go unacknowledged and mismanagement and a lack of proper supervision can lead to neglect and abuse (Smart, 1997).
At a time when they should be receiving more care and attention some older people are being abused by the very people who are meant to be looking after them. It would seem that marketisation has led to a lack of proper control over what goes on in some residential homes and there needs to be some mechanism whereby such places are inspected on a regular basis.
There are general guidelines related to social work practice and this is especially the case when it comes to the protection of the weak and vulnerable. All local authorities have a duty to be aware of the number of people in their area who might be considered vulnerable adults. The legislative framework that governs the actions of a social worker working with vulnerable adults is based on the following:
- 1948 National Assistance Act Part 3
- Local Authority Social Services Act 1970
- The Chronically Sick and Disabled Persons’ Act 1970
- National Health and Community Care Act 1990
Depending on the age of the vulnerable adult they are dealing with then the social worker will also have to bear in mind:
- Section 45 of the Health Service and Public Health Act 1968
- Section 117 of the Mental Health Act of 1983
- General understanding of the 1998 Human Rights Act
- The National Services Framework for Older People
Social workers should also be conversant with the terms of the 1995 Disability Discrimination Act before they make any assessment of a vulnerable adult. A lot of the problems that vulnerable adults experience, particularly if they have mental health problems, are due to the fact that many professionals (particularly medical professionals) still work with the medical model of disability. This model holds that a person’s problems and vulnerabilities are rooted in their pathology i.e. they are part of that person’s make up. The problem with this model is that there is a tendency to hold the person responsible for whatever their problems may be (Oliver, 1996). A more favorable model for the service user is the social model. This model looks at factors that are external to the service user such as environmental factors and any other social factors that may give rise to ill health or vulnerability.
Who Are Vulnerable Adults?
Vulnerable adults might be those people who need care because for one reason or another they cannot look after themselves. This might include the following:
- Older people
- People with mental health difficulties
- People with physical disabilities
- People with learning disabilities
- Substance Misusers
- Homeless People
- In an abusive relationship
According to media and Government reports, older people are often subject to abuse by the people who are meant to be caring for them. The same thing happens to people with the sort of physical disabilities that prevent them caring for themselves, people with mental health difficulties and people with learning disabilities. In some cases women are more vulnerable and more at risk than men as in some cases they face the risk of sexual assault by carers, particularly if they are not family members. Government concerns over the abuse of vulnerable adults led to the setting up of the POVA the Protection of Vulnerable Adults Scheme in England and Wales. The scheme is implemented with regard to care homes for vulnerable adults, checking the backgrounds of people who work with vulnerable adults, either in a care home or in the person’s own home. The problem is that until a crime is committed there is no actual legislation that deals with the protection of vulnerable adults. Some local authorities have produced guidelines for multi-agency working in case of the abuse of vulnerable adults.
Harm and Abuse of Vulnerable Adults
Vulnerable adults can be abused or harmed in a number of ways, some of which are criminal. Non-criminal abuse might include not paying sufficient attention to their needs, denying them their human rights by not treating them as a person of equal human worth. Abuse can also occur by default when a carer neglects to take proper care of someone who is vulnerable by leaving them in an unclean state or leaving a confused person to wander without supervision. The more criminal aspects of the abuse of vulnerable adults can include stealing from them, misappropriating money from their accounts and physical or sexual assault. Sometimes it is as a result of harm that a vulnerable adult comes to the attention of social services and it is then the social worker’s job to assess the needs of that person.
When a social worker makes an assessment of need, even if the person in need is recognized as a vulnerable adult, they can only provide services if certain criteria are satisfied. Those people who have a score lower than 4,5 or 6 may only be entitled to information and advice (Moore, 2002). This means that a lot of vulnerable adults are left out in the cold and it is sometimes the case that they become involved with mental health services by being sectioned under the 1983 Mental Health Act. Here an ASW or Approved Social Worker can recommend to a mental health team that a person be sectioned or forcibly detained for a period of 28 days if they are regarded as being at risk or posing a risk to others. Vulnerable adults are another group who may at sometime need the services of an advocate to put forward their concerns. It is also the case that unless and until there is some legislation in place for the protection of vulnerable adults this abuse and neglect will continue.
Disability Discrimination Act 1995 http://www.drc-gb.org/thelaw/thedda.asp
Moore, S. 2002 3rd Edition Social Welfare Alive Cheltenham, Nelson Thornes
Local authorities now have a duty to act in ways that are conversant with the 1998 Human Rights Act and this means that social workers have a duty to help people with mental health difficulties to deal with any problems they encounter. Some research tends to suggest that over the last fifteen years those who use mental health services have been treated in a prejudicial way. This is largely a result of the fact Government discourse is phrased in such a way that this group is seen mostly in terms of the risks they may pose to the rest of society.
Some social workers have a lot of power when it comes to people who are assessed as having mental health problems. In Britain we have what are known as Approved Social Workers, these social workers are often involved in sectioning a person – that is to say a person can be detained for twenty eight days without their consent for assessment of their mental capabilities. This can be problematic because if a service user is being aggressive it is not always easy to tell whether this is just in response to whatever is going on at that moment or whether the person actually does have a mental health problem or a psychosis.
Hannigan and Cutliffe (2002) argue that the medical model of health is the most prevalent in the mental health sector. Under the terms of the 1983 Mental Health Act this often results in medical treatments that may involve, for example, the use of drugs or electro-convulsive therapy without the person’s consent. What is most worrying about this is that it can be used as a threat against vulnerable adults who may not need this kind of treatment but who may be irritating the professionals with whom they come into contact. This is especially the case if the adult concerned has a tendency to be a bit aggressive. Professionals may often assume that this person is displaying psychosis when they are simply displaying an exaggerated form of annoyance at what is going on. Current legal definitions of what constitutes a mental disorder (and the guidelines with which many professionals work) are not necessarily the same as psychiatric definitions of what constitutes mental illness. With recent changes to the Mental Health Act this situation becomes even more worrying because it widens the net to include other definitions of mental illness, definitions which could just as well be a result of social misfortune as something inherently wrong with a person.
Some research tends to suggest that the mental health system is racist and that black and white youths who may behave in a similar manner are treated differently and black youths are more likely to be assessed as having a mental health problem.
The disproportionate use of compulsory sections of the Mental Health Act 1983 for black people, and the links between mental health and the criminal justice system, suggest that the basic rights of many black service users are under threat. A holistic model would emphasise basic human rights and require great caution in the use of statutory powers in mental health services. Black service users’ rights would be safeguarded through anti-discriminatory procedures, accessible appeals and complaints systems, and accurate monitoring. Safeguards include quality assurance systems based on service users’ views. These should incorporate indicators of service outcomes based on improvements to black service users’ quality of life (Ferns, P. 2000 no pagination)
Increased use of sectioning under the Mental Health Act could be regarded as a form of blackmail in mental health – just another way of saying you behave the way I say you will behave or this is what will happen to you. The police also have greater powers under the 1983 Act. Section 136 gives them the right to detain people in a safe place for 72 hours if they are considered to be a risk to themselves or others, even if they haven’t been aggressive or done anything else that would warrant being detained. This is a frightening state of affairs because it means that anyone who upsets authority in some way could be at risk of losing their liberty without charge and without trial.
The mental health charity Mind say that actual psychosis is far less prevalent in Britain than some figures would have us believe and that the 1983 Act is in danger of being used as a means of social control rather than the protection of the public and of vulnerable adults.
Clearly there are many issues around Mental Health that are extremely worrying. If you are homeless you are automatically seen as having mental health problems and some literature also refers to women who have experienced domestic violence in these terms. Mental health issues and social blackmail it would seem are very closely related.
http://www.communitycare.co.uk/articles/article.asp?liarticleid=7951 Full ref. in bibliography