Kate Adams explores capacity, consent and choice for young people with complex SEN
Sex and money are two tricky subjects no matter what your age. They are made trickier though, where a young person’s “capacity” to make decisions in these key areas of their life once they turn 16 is in question or where they may be made vulnerable through their choices.
Working with, or parenting, children with complex SEN (or indeed, any child) can present challenges and as they grow and mature, those challenges evolve and change. All young people gain additional legal rights at the age of 16 – they can choose how to spend their money, to seek medical advice confidentially, to consent to medical procedures and, of course, they can choose to have sex.
As most young people mature, they are able to understand advice and take more responsibility for the consequences of their decisions in these and other areas – whether we as adults approve or not – but those with complex SEN may not reach that level of maturity at the age of 16, and in some cases may never reach it.
Protecting or restricting?
As parents or professionals, when a young person reaches 16, we may find ourselves having to balance our role as protectors against the young person’s wishes to have new adult experiences but which, given their complex challenges, may put them potentially at risk. How do we protect them and what support is available to do so?
Let’s think about the delicate issue of consenting to having sex when a young person may not fully understand the potential consequences of sexual activity – exploitation, pregnancy or sexually transmitted disease, for example. This naturally brings with it an added level of complexity and concern for the adults around the young person, who need to consider carefully whether or not the young person has the “capacity” to consent and whether or not additional support may be needed to help them make the best choices for them.
The guidance and legislation that can help parents and professionals in assessing whether a young person is able to make decisions which are in their own best interests is detailed in the Mental Capacity Act (MCA) 2005 (which was fully implemented in 2007). This applies to people aged 16 and over and it is designed to make sure that decisions are made in a person’s best interests and in the least restrictive way,
while protecting them from risk where necessary. For most young people, decisions they are comfortable with can be reached with support from agencies including the NHS and adult social care teams; however, in some cases, it may be that there are still areas of dispute or disagreement and this is where the Court of Protection, which exists to make decisions about financial or welfare matters for people who can’t make those decisions for themselves at the time that they need to be made, can help.
Everyone is deemed to have capacity unless it is proven otherwise and any decision around a person’s capacity must be both time and decision specific; for example, a person can’t be deemed to generally “lack capacity”. In the case of a sexual activity, the question should be “does X have the capacity to consent to a sexual relationship at this time?” and not, “Can X have sexual relations ever?”
How is mental capacity assessed?
Assessing capacity can be done both formally and informally and often involves liaising closely with the professionals and others who know the young person well, before any decisions are made. There are two stages to assessing this: does the person have an impairment of mind or brain and then, does that mean the person isn’t able to make the decision at the time it needs to be made?
The MCA says a person is unable to make a decision for
themselves if they can’t do one or more of four things:
- understand information given to them about a particular
decision - retain that information for long enough to be able to
make a decision - weigh up information available
- communicate their decision.
Relevant information is then gathered and this includes evaluating the risks and benefits. In terms of sexual activity, the risks include exploitation, STDs or unwanted pregnancy, but the benefits might be being happier, feeling loved, appreciating your body, greater self-esteem, expanding a new relationship and enjoying new experiences. The assessment will look at whether these out-weigh any risks.
The Court will consider all of this information as well as looking carefully at any relevant case law before making a decision. The Court is keen to make sure that the rights of a person to act autonomously are protected unless there are very good reasons for those rights to be curtailed.
Planning ahead
Acknowledging a young person’s emerging sexuality is a challenge for all parents and for many professionals working with young people. However, burying our heads in the sand and avoiding the subject can have a highly detrimental effect.
Facing the prospect of difficult, and perhaps embarrassing, conversations about sexual activity is best done incrementally and care givers at school, in care or at home should think ahead. It is better to consider in advance the freedoms young people may seek, planning how to manage potential disagreements, rather than dealing with detrimental outcomes.
Preparation for adulthood should begin early, especially if young people are likely to need support throughout their lives. Our emphasis should be on protecting the young person while improving their life chances, helping them gain skills to become as independent as possible.
Author: Kate Adams
Kate Adams
Kate Adams is Head of Nursing at St John’s Catholic School for the Deaf in West Yorkshire.
Website: https://www.stjohns.org.uk/
