'Because of the status society puts on being in a relationship, people with learning disabilities are not unique in sometimes tolerating being treated badly to maintain a relationship,' says author and mental capacity law expert David Thompson. Coinciding with the publication of his new book, "Sex, Personal Relationships and the Law for Adults with Learning Disabilities", we caught up with David to hear how the most daunting issues around relationships that face carers should be approached.
Learning Disability Today: What is the main legislation that those working in care roles with people with learning disabilities need to be aware of?
David Thompson: The Mental Capacity Act 2005 is critical in England and Wales. Staff should be regularly reflecting whether their work with adults with learning disabilities is consistent with the five principles. Essentially this means supporting adults to make their own decisions wherever possible. Only if there is evidence a person is unable to make a particular decision can staff act in their ‘best interests’.
The Care Act 2014 (primarily covering England) is also very important. It identifies the local authority’s responsibilities to assess and provide services to adults with learning disabilities and their family carers. It also sets out how the potential abuse, including sexual abuse, of adults with learning disabilities needs to be responded to by organisations.
Learning Disability Today: Could you briefly outline the principles underpinning the Mental Capacity Act and the Sexual Offences Act?
David Thompson: The Mental Capacity Act has five principles which in relation to sexual issues can be interpreted as:
1. People with learning disabilities should be assumed to be able to have relationships and sex.
2. People with learning disabilities should be provided with sex education.
3. Making what some may consider to be poor choices about relationships and sex, does not mean the person is unable to make their own decisions.
4. Only if a person is assessed as not being able to make their own decisions about relationships and sex, can services make decisions in their best interests.
5. Where a person lacks capacity to make decisions about sex and relationships, it may not always be in their best interests to prevent all opportunities for this.
The Sexual Offences Act defines what are sexual crimes and sets out the maximum sentences for each. Some key principles are:
• The age at which people can consent to sex (16) is the same regardless of the genders of the people involved.
• A responsibility for people (particularly men) to ensure they have the valid consent of any sexual partners. This includes not taking advantage of vulnerabilities, including if the other person is drunk or has learning disabilities.
• Recognising some relationships are incompatible with valid consent to sex. This includes staff and volunteers who work with people with learning disabilities and many family relationships (for example, fathers with their adult children).
Learning Disability Today: What are the scenarios that carers can find most daunting and how can they be overcome?
David Thompson: Carers may come across people with learning disabilities in relationships and/ or having sex where there is an imbalance of power. For example, a man without learning disabilities having sex with a man or woman who has learning disabilities, or a man with learning disabilities being insensitive to a female partner with learning disabilities. In these situation carers will be concerned about the potential exploitation or sexual abuse of the person who is less powerful.
In these situations, services need to consider whether a sexual offence is being committed. They also need to consider whether the less powerful person has capacity to make their own decisions concerning the relationship – or can be supported to do this. Because of the high-status society puts on being in a relationship, people with learning disabilities are not unique for tolerating being treated badly to maintain a relationship. This may include putting up with having sex which they find uncomfortable or painful. Carers should therefore avoid over-romanticising relationships and provide people with learning disabilities with support which reflects how they may experience their personal lives.
Learning Disability Today: What are the most common issues related to marriage and civil partnerships that you’ve encountered?
David Thompson: I have attended one wedding involving a couple with learning disabilities who recently celebrated their 15th anniversary. Their story was familiar in that they had to ‘prove’ their relationship over many years before they were given practical support to get married. I am not suggesting when a couple with learning disabilities says they want to get married they should be directed to a registry office (or church) to make the arrangements that day. However too often unreasonable obstacles are put in the way of people with learning disabilities to deter and delay them from getting married. The implication is that people with learning disabilities are not worthy of the institution of marriage.
Other experiences include meeting several men with learning disabilities whose marriages to women coming from south Asia had been arranged by their families. In addition to wanting their sons married, these families were keen for them to father children. These men weren’t in control of the decision to get married (as is the case for many other people with learning disabilities who are denied the opportunity to get married). These contacts predated the recent awareness and legislation concerning forced marriages detailed in the book. They also raised concerns about the vulnerability of their wives who had little or no English and were thousands of miles away from their own families.
Learning Disability Today: How should safe sex and contraception be approached and what support can be provided?
David Thompson: One chapter in the book sets out the experience of sex for people with learning disabilities based largely on the research I undertook with Michelle McCarthy. The common differences in power between individuals with learning disabilities and the people they are having sex with (whether or not they have learning disabilities) need to be understood when providing support regarding safer sex. For example, consider how realistic it is for a woman or man with learning disabilities who is putting up with penetrative sex which is painful, to insist their male partner uses a condom. Where the risks of HIV or other sexual diseases are significant, consideration should be given to medical interventions including the recently available prophylactic treatments for HIV and Hepatitis vaccination.
Work by Michelle McCarthy with women with learning disabilities who were prescribed contraception has shown how little information and control they have generally had about this. The Mental Capacity Act 2005 says decisions about contraception should be made by women themselves wherever possible. Where there is a dispute about a woman’s ability to make her own decision or what is in her best interests, services should refer the matter to the Court of Protection. This should happen, for example, if a woman is assessed as lacking capacity to make a decision about contraception but she does not want to use contraception despite concerns expressed by others regarding her ability to raise a child.
The book discusses one case where the Court of Protection ruled it was in the best interests of a man with learning disabilities in a relationship with a woman with learning disabilities to have a vasectomy.
Learning Disability Today: What motivated you to write the book?
David Thompson: The Ann Craft Trust had been asked to provide a course to staff working in the Nottingham area on the law related to consent. At the time I was on the board of this organisation, which works to minimise the risk of abuse for adults and children with disabilities. I offered to run the course having worked extensively with people with learning disabilities on sexual issues and subsequently on the implementation of the Mental Capacity Act in England. The course was very well received. I ran it again while working with Hounslow and Richmond Community NHS Trust.
Not long after this Pavilion Publishing [owners of Learning Disability Today] contacted me to see if I could suggest anyone to write about the current legislation. I put myself forward because of my knowledge of the subject but also because of a commitment to produce materials which support people with learning disabilities to have relationships while at the same time recognising the risk of abuse.
Learning Disability Today: Who is the book aimed at and why should readers buy this book in particular?
David Thompson: This book is designed for staff who work with adults with learning disabilities. This includes support workers as well as professionals such as social workers, psychiatrists, psychologists and community nurses. The family carers of people with learning disabilities would also find it helpful, particularly if their relative with learning disabilities is seeking or having relationships or sex.
Although the focus of the book is people with learning disabilities, the legislation discussed equally applies to other adults where there may be questions about their ability to consent to sex and relationships. This would include some people with dementia or mental health needs. Therefore, staff working with these groups should be using the guidance from the courts discussed in the book in their own practice.
The book is unique in bringing together the legislation which affects the sexual lives of people with learning disabilities. Recent court judgments are included which should inform the way people with learning disabilities are supported in these areas. As the book notes, the Court of Protection is becoming increasingly impatient with services who are not, for example, adhering to the Mental Capacity Act. They understandably see this as a failure to respect the rights of people with learning disabilities.
David Thompson spent over 10 years providing sex education to people with learning disabilities, the focus of his PhD. He was heavily involved in the implementation of the Mental Capacity Act (2005) for the Department of Health in England, which included developing the Independent Mental Capacity Advocate role for the Deprivation of Liberty Safeguards. Before relocating to Australia with his civil partner in 2016, David was vice-chair of the Ann Craft Trust.