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Service providers should support people with learning difficulties to develop meaningful interpersonal relationships, but robust and sensitive procedures are essential in order to balance rights with risks, say psychologist Steven Hendy and colleagues.

The white paper Valuing People sets out a vision that will establish the direction for the provision of opportunities and services for people with learning difficulties in the 21st century.¹ Its foundations are the four key principles of rights, independence, choice and inclusion, and it works within the context of the Human Rights Act and the Disability Discrimination Act. Common to each is a clear recognition that every individual has a clear set of rights and responsibilities and people with learning difficulties should be offered every opportunity to lead lives which are as fulfilling as possible.

It also recognises that people with learning difficulties are often socially isolated, and states that: "Good services will help people with learning disabilities develop opportunities to form relationships, including ones of a physical and sexual nature."

We have attempted to develop a process which might assist service providers to put this aim into practice, building on work undertaken by the West Midlands Learning Disability Forum,² which produced good practice guidelines for staff in relation to social and personal relationships and people with learning difficulties.

Their guidelines recognise the fundamental need of all people to have and enjoy interpersonal relationships. The forum has also outlined the rights and responsibilities of people with learning difficulties, and those of their carers and managers, drawing on current thinking across a range of topics including the law, consent, risk, confidentiality, whistleblowing, sex education, and contraception, for example.

Drawing on the forum's guidelines we have tried to tackle what is probably the greatest challenge faced by services in supporting people to develop relationships; namely the awkward tension between supporting people to realise their right to engage in sexual relationships should they choose to do so, and the need to protect vulnerable people from exploitation.

This issue presents some difficulties for service providers as there is limited case law in this area and frequently no clear legal precedent to guide a decision process. It should also be recognised that the principal aim of the law in this area is to protect the "vulnerable" from the "unscrupulous" and any case taken before the court is likely to be tried on its own merits (Gunn provides a more detailed account of sex and the law³).

This does not easily help service providers balance protection and duty of care with the rights of the individual. This difficulty is often compounded by the view that in order to engage in sexual relationships it must be proven that the individual has full capacity to consent to intimate sexual behaviour.

These are complex arguments, but the following proposed process might assist service providers in moving towards a "responsible risk-taking" approach, where it is appropriate to do so. There are three levels for assessing, developing and implementing interpersonal and sexual relationship care plans, and its cornerstones are the individual's person-centred care plan (PCP) and risk assessment.

In line with the white paper each individual with a learning difficulty who is in receipt of statutory or private care should have a PCP, which should reflect the needs and preferences of the individual. We suggest that a component of this plan reflects the individual's needs and preferences regarding the development and maintenance of interpersonal relationships. In some cases this would also include sexual relationships.

For the most part an individual's PCP will be co-ordinated at a local level and by the person's immediate carers (level 1). The development of an individual's PCP and in particular the component around interpersonal and sexual relationships would obviously need to be supported by clear guidelines on risk assessment, protecting vulnerable adults, policies for acting on signs of abuse, and advocacy, for example. These guidelines would also define the level of responsibility that would be appropriately managed by the individual's immediate care team - this would be determined principally by guidelines on abuse, vulnerability, and risk assessment.

Where it is deemed that the degree of risk exceeds their authority and expertise the case should be referred to a multi-disciplinary team. This second level team should include an advocate and members of the individual's family, where appropriate.

The team, which would include a social worker, community nurse, psychologist, psychiatrist, key worker, advocate, and so on might choose to co-ordinate this PCP through a statutory framework such as the care programme approach, or other local procedures for supporting vulnerable people. Their terms of reference would include issues of risk assessment, vulnerable adults and so on, in much the same way as at level 1. However, including a team of people with relatively more expertise would allow closer scrutiny of the risk assessments, and so aid the development of an appropriate care plan.

So where an area of concern is identified and when the level 1 team is satisfied it has exhausted its available skills and resources, or where some unresolved risk remains, the client might then be referred to the level 2 multi-disciplinary team.

Take for example, a male client who is causing harm to himself through inappropriate masturbation. Here it is likely that a more detailed assessment of risk and vulnerability would be completed, and the case might be co-ordinated within the framework of a complex care programme approach (CPA). Once these assessments and subsequent management plans are in place the team should question whether it is appropriate to develop a more pro-active management plan.

If so, the guiding principle of this plan should be of "responsible risk taking" in order to promote the person's ability to have a fulfilling and valued lifestyle; for instance the plan might involve teaching the person how to masturbate in a safe manner.

Obviously, this might lead providers into uncharted territory, so we would recommend that at this point the care plan should be assessed by an advisory group (level 3), which might include senior health and social services representatives, a legal adviser, and an independent adviser from Mencap, for example: again they should be guided by the white paper and the concept of responsible risk-taking. They should also act as ethical scrutinisers and take final responsibility for authorising such a care plan.

Although there might be no clear case law, if the advisory group believe suitable steps have been taken to address foreseeable and reasonable risks and it is believed to be in the individual's best interests, the care plan could be implemented. Additionally, we would recommend that all cases that are discussed at level 2 and 3 are formally reviewed, and any subsequent recommendations should be incorporated into policy, if appropriate.

As people develop relationships there will be an increased likelihood they will become parents. Research indicates that people with learning difficulties are able to learn parenting skills, especially when their difficulties are mild.⁴

However, it is very clear that the support available to these parents is very patchy.⁵ Therefore, in addressing the issue of supporting people to develop relationships' services, and agencies will also have to consider the broader implications.

Steve Hendy is a clinical psychologist; Jeanette Knapper is a service development manager; Judy Thorley is a nurse manager, and Warren Low is a day service manager. The authors work for North Staffordshire Combined Healthcare NHS Trust.

References

¹ Department of Health, Valuing People - A New Strategy for Learning Disability for the 21st Century, The Stationery Office, 2001

² West Midlands Learning Disability Forum, Social and Personal Relationships.  Policy and Good Practice Guidelines for Staff Working with Adults with Learning Disabilities, BILD, 2000

³ M J Gunn, Sex and the Law (4th Edition), Family Planning Association, 1996

⁴ M A Feldman, "Parenting education for parents with intellectual disabilities: a review of outcome studies", Research in Developmental Disabilities, 15, 299-322, 1994

⁵ S McGaw, "Services for parents with learning disabilities", Tizard Learning Disability Review, 1, 21-28, 1994, and S McGaw, "Practical support for parents with learning disabilities", in J O'Hara & A Sperlinger (eds), Adults with Learning Disabilities: A Practical Approach For Health Professionals, Wiley, pp123-138, 1997