Balancing act

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