Any parent makes decisions about protecting children from potential adversity, and equipping them to deal with risk themselves. Additional needs demand specific understanding (Goleniowska H. [n.d.]). The type of risk often discussed concerns medical intervention for a child with sickness or disability, but the range is much wider than this.
Often there is one risk perception to balance against another. For example, movement sensors can detect when a child is having a seizure in the night; but some people distrust them, in case they do not always trigger.
Needless to say, there are academic studies of risk and they are worth a look for any practical insights on offer.
If a dilemma is particularly key and involves a lot of possibilities and evidence, a decision support tool could help.
Many decisions involve doing some research into possibilities. For instance, choosing a preferred school might involve practicalities like travelling time and routes and visiting schools and finding out what would suit the child from prospectuses, inspection reports, friends etc. (cf. Government of Northern Ireland 2015). Sometimes an element of risk comes into that, e.g. if there are other children going to a secondary school who have bullied a child in primary. A more formal decision aid may not be needed if after doing these things, the choices are already clear.
Below, three examples showing how formal aids can be used:
- DUETS is an aid designed for patients, carers and others, where uncertainties about the effects of treatments are collected and published (National Institute of Health and Care Excellence 2015). It is at an early stage but potentially it will help to open the door to understanding risks connected with approaches to neurological and other conditions.
- An example on stroke risk (Tidy C. 2015) uses a table-based aid to compare two or more possible decisions. The first column asks questions, and the following columns contain possible answers, using evidence-based research and experience. Making out such a table for your own dilemma might clarify things for you and for others involved, and might simplify things by enabling some of the possibilities to be eliminated.
- ATN/AIR-P (Autism Speaks 215) is a downloadable set of decision tools aiming to aid families who are unsure about using medication for challenging behaviour. The set once again includes a table approach to weigh up risks and benefits, where the authors have done the research to set out the evidence.
Formal risk assessors in businesses etc. assign numbers / scores to find out whether a risk is worth taking and what resources are needed to mitigate it. (“The quantity of risk is equal to the sum of the probabilities of a risky outcome (or various outcomes) multiplied by the anticipated loss as a result of the outcome.” Boundless 2015). Maybe this approach is over the top for everyday decisions such as whether and when to allow an impulsive child to cross the road on their own, but it could be worth looking at for issues that have not been clarified in less formal ways.
Sorting out misleading information
It is worth adding that there is an art to applying the evidence that others have gathered and the conclusions they have drawn from it, even if they are good sources, particularly if statistics are involved. Statistics often form a part of the evidence but they can be misleading because they can present the same facts in markedly different ways. The charity Sense About Science publishes a number of laymen’s guides including Making sense of statistics (Sense About Science 2010). Others in the same series cover topics that parents might be anxious about, such as medical tests. The further advice in the Cerebra Guides about appraising information is needed even for good sources.
Anyone working out risk accurately needs to start with the correct basic information about the situation, otherwise the logic built upon that may not be correct. Again, even good sources can fall into this. Some interesting examples of misleading uses of evidence and statistics illustrate the things to look out for (Spiegelhalter D. 2008-2015).
There is another art in supporting a child to make decisions about risk and to work with adults on this, especially where there are cognitive and emotional elements to their condition. It is accepted as a right for children, as well as for older people with disabilities who may still need extra support in making decisions, sometimes referred to as “the dignity of risk” and recognised by the United Nations (UNHCR 1996-2015).
This right involves being able to consider and take risks and not to be automatically prevented from doing that by the perceptions of others. Having said this, some children will not yet be equipped for making every kind of decision in terms of what they can understand and deal with.
Advice for assessing and managing risks in a proportionate way (Victoria Dept of Human Services 2012) includes providing information about options; thinking together about ways to manage any real or perceived risks, and what might happen; helping to understand if a desired risk cannot be taken; and agreeing to disagree with a parent, or someone else who has a duty of care in a situation. It is pointed out that some decisions might involve risk not so much to them as to someone else.
The authors of a book about helping children to take good risks (Eppler-Wolff N. and Davis S. 2009, see pp.122-128, below) identify steps that parents can take. They also take into account effects of neurological and temperamental differences, and explain why it is important to a child’s development that they are enabled to take risks.
Central to the understanding of risk is the concept of probability, i.e. that something may or may not happen and how to take that into account. In the National Curriculum, it is considered that children can learn the general concept at about ages 5 upwards (University of Cumbria 2006).
Bradberry T. 2015 offers some tips on good decision-making from the business world that would apply to parents as well as children, including: turning small decisions into routines so that they take less effort; taking advantage of your brain’s clearest time of day; recognise emotions and choose a good time from that point of view as well; and make the process easier by using a pre-determined set of questions.
One advantage of making a reasoned decision, and knowing how you have got there, is that when you have to argue a case with someone else you will have the arguments at your fingertips. For example, it is easier for a cash-strapped service provider to justify giving a service to someone who is presenting clear evidence of their need for it.
Another advantage is that it helps you to use consistent strategies for recurring risks, an approach which, if the child can perceive them, should make things more understandable to them.
Thirdly, thinking in advance about risks that are currently not an issue but are more likely to come up with a child’s particular disability and characteristics, should mean that decisions can be made quickly when they arise. At a meeting in a public venue or at an organised coach trip, for example, someone will stand up and tell everyone where the exits are and what to do in an emergency. However, what if it would be more difficult for your child to use that exit or if it would take them more time to get there?
Recently a colleague who travels with her son advised, about pre-positioning and pre-booking with certain airlines, to let the company know beforehand of all additional needs that a child has; to request extra baggage allowance for equipment if needed; to pre-book seats and child meals; and at the airport, to go to the Special Assistance desk for help with access, including an aisle chair if needed, to be first on and last off aircraft, or anything else like that; and to get a letter from the GP to help with travel/customs/border security especially if carrying any medication. What a difference this kind of planning can make.
- Autism Speaks 2015, ATN/AIR-P Medication Decision Aid.
- Boundless 2015, “Making Decisions Under Conditions of Risk and Uncertainty.” Boundless Management. Boundless, 12 Aug. 2015. Boundless.
- Bradberry T. 2015, How Successful People Make Smart Decisions. Forbes, http://www.forbes.com/ (to find it, search within the website for the title).
- Eppler-Wolff N. and Davis S. 2009, Children Who Soar: Helping children take good risks. Pages 122-128.
- Goleniowska H. [n.d.] Why Take the Chance: Letting your child take risks, (Downs Side Up).
- Government of Northern Ireland 2015, Finding a school to suit your child.
- Health and Safety Executive (HSE) 2001, Reducing Risks, Protecting People.
- National Institute of Health and Care Excellence (NICE) 2015, UK DUETs (Database of Uncertainties about the Effects of Treatments).
- Sense about Science 2010, Making Sense of Statistics.
- Spiegelhalter D. 2008-2015, Understanding Uncertainty, University of Cambridge Blogs.
- Tidy C. 2015, Atrial Fibrillation Stroke Prevention. (Patient-info).
- UNHCR 1996-2015, The right to take risks and make mistakes: equal recognition before the law for people with disabilities.
- University of Cumbria Faculty of Education, Probability in the National Curriculum, PFM304 mathematics unit 12, (St Martin’s College Cumbria).
- Victoria Dept of Human Services Australia 2012, Supporting decision making: A guide to supporting people with a disability to make their own decisions.