What can you do when your son or daughter gets in trouble with the law? It can happen. Not everyone will have this experience, but if it does happen, it is good to have some knowledge and support. Each country will have a different legal process, but will need the same information regarding PWS so if you can take along information with you, do so.
The underlying cause for escalating behaviour is anxiety and being "in trouble with the law" will naturally raise anxiety. Facing a court trial for anyone will provoke anxiety and the person with PWS may react badly when faced with a Judge. Screaming, yelling abuse, refusal to conform, may be normal behaviour for them to try to prevent something bad from happening, but may escalate the case against them. Retaliation against a safe environment may also show up in numerous ways from self-soiling, self-abuse, yelling, or trying to set fires. It is important to know the system and the processes that will be followed, so you need to make sure you have someone - such as a psychiatric clinical adviser who works within the justice system, or a coordinator working between the courts and residential placement - as well as your own lawyer.
You may find assistance within your PWS Association, or you may wish to contact us for further information and support.
PWS & the Criminal Law
The following articles were written by Tony Holland (President, IPWSO) and Georgina Loughnan (Board member). It can be downloaded as a separate article here.
When a person with Prader-Willi Syndrome (PWS)
is in trouble with the law:
what to think about and what you can do.
People with Prader-Willi Syndrome (PWS) may get into trouble with the police and may have to appear in Court because of behaviour relating to food (for example stealing food, other consumables or money; eating in restaurants and not being able to pay), having a temper outburst and hitting or threatening another, or other antisocial behaviour. Such events cause great concern to people with PWS, their families and any other people involved. This document sets out some of the issues that should be considered on such occasions. It cannot give definitive recommendations, as exactly what happens will depend on the policies and laws of the country where the offence is alleged to have been committed. Also, at an individual level, there will be differences if the person concerned is a child or an adult with diminished capacity and the outcomes may be influenced by the attitude of the police and courts, access to good legal advice, support from the family and others, and the presence of an established and fair criminal justice system. However, ensuring that all concerned have at least some understanding of PWS can have a positive effect. Throughout the document we highlight in bold, key points.
The criminal justice system
Usually it is the police who are called in the event of behaviour that is thought by others to be against the law (e.g. shoplifting, hitting another person). The police may exercise some discretion based on their assessment of the situation at the scene, varying from giving an informal warning to arresting and charging the person who is alleged to have engaged in unlawful behaviour (for example, theft or assault). If there are concerns about the person’s health at the time the police arrive, urgent medical advice may be requested. This, for example, would be important if the person with PWS appears to be displaying symptoms of a previously diagnosed mental illness or has developed an additional mental illness such as bipolar disorder or psychosis, or there is any indication that they are physically unwell.
Once arrested, different countries may have unique processes that are followed but this may be a point in which the authorities (police and/or prosecution) may show some discretion. They may decide not to proceed with charges, and just give a formal warning, but they may decide to prosecute and go to court. Different criteria may apply in different countries, but this decision could be influenced by their knowledge of the person concerned and the possible implications of PWS on their actions; by whether or not, in the event of the person pleading not guilty, there is a reasonable chance of conviction; and more generally, whether it is considered in the public interest to prosecute.
PWS is a rare condition and it is unlikely that the police and lawyers involved will have heard of it. It is during this period of time, when the authorities might be deliberating about what to do, that information should be provided about PWS so that they can put the alleged crime within the relevant context. If you have a National PWS Association it may be able to help, if not, IPWSO can provide information. Parents, you will also have become experts about your child with PWS but sometimes information from a neutral source, parent advocate or professional, can be more influential. Information may initially be provided verbally but ideally it should also be given in writing.
If there are concerns that the incident that led to police involvement was out of character or unusual for that person and that they may have developed a physical illness (e.g. complaining of pain or vomiting) or have become mentally unwell (e.g. disturbed mood, unusual behaviours or ideas), those concerned should be advised to seek medical help immediately.
At the time of initial police involvement and subsequent interviews
It has been recognized that people with impairments in cognitive and social abilities and particularly people who are considered to have an intellectual (learning) disability, may be vulnerable when interviewed by the police and may not understand what is happening in the legal process. In some countries laws require the police and courts to make special provision for those who are seen to be at risk at this time and the courts may ask for additional assessments before deciding exactly what to do.
Early in the process your ability to convey your understanding of the person with PWS may enable you to bring calm to the situation and to provide sufficient information that all concerned decide not to proceed further. However, if the person with PWS is arrested and has to attend a police interview it is important to appreciate that he/she may fail to fully understand what is happening to them and the potential seriousness of the situation. In many countries there will be the requirement to formally warn the person arrested that the evidence collected during interview may be used in any subsequent court appearance – referred to as ‘the caution’. People with intellectual disabilities, including people with PWS, may not understand this warning and may implicate themselves in the way that they answer questions. People have been known to confess to things they did not do, perhaps because of the stress at the time or because they didn’t understand what was happening or what was being asked of them. For people with PWS food or the lack of it and the associated anxiety may influence how they respond or behave. Food might also be an inducement to say and do things that are unhelpful or may not be correct. The drive to eat is so strong in people with PWS that food offered to a person with PWS while in custody at a police station or in prison, may become an incentive to “re-offend”. If the alleged offence for which the person with PWS has been charged is serious, the police, and later the courts, may decide that the person should be held in custody (usually in prison) until the case is presented in court. Correctional facilities (prisons/jails/detention centres) are unhealthy environments for a people with PWS. They provide minimal food security, high energy food, reduced opportunities for exercise or participation in preferred activities, stress management an appropriate sensory stimulation. People with PWS may also be highly vulnerable in such situations, to adopting poor habits of other inmates and be at risk of abuse.
At the time of arrest inform the police that the person being arrested has a genetic condition called PWS (it may not be immediately obvious to the police that the person has a medical condition particularly if the person has been on growth hormone since childhood) and that this will affect his/her understanding of what is happening, that food has a particular significance and that he/she will be particularly vulnerable to exploitation and mental ill-health in certain circumstances, such as if held on remand in prison.
Ensure that the police officers interviewing and any lawyer representing the person with PWS is aware of the features of PWS and how the environment where the interview takes place, his/her level of understanding of the questions, and the presence or absence of meals, may all make a difference. Also inform the interviewers that the rigidity displayed by some people with PWS and their inability to respond to the demands placed upon them in these strange and changing circumstances, are characteristic features of the syndrome and should not be taken as necessarily an indication of evasiveness, lying or uncooperativeness. The interviewers also need to know to speak to the person with PWS using simple language and allow extra time for them to comprehend what is said to them and to respond appropriately.
In most countries it is a requirement that the person is legally represented during the interview unless he/she waive that right. For someone with PWS that representation, ideally by a lawyer who has some understanding of disability, may be particularly important in ensuring that his/her rights in the interview are protected. If the law of your country allows, also ensure that any additional help is present (for example, an independent person, with a good knowledge of PWS, supporting the person with PWS during the interview - sometimes referred to as ‘an appropriate adult’). This person may, for example, check that he/she understands what it is that is being asked.
If a decision is made to prosecute and to go to court
For the criminal justice process to be fair there is an expectation that the person being prosecuted is legally represented, is able to participate in the preparation of their defense, understands the charges and the difference between pleading guilty or not guilty, knows the roles of the different people in court (i.e. judge, prosecutor, defense attorney) and understands the different stages of any hearing and how to behave during the court process. In the lead up to a court appearance questions may be raised as to whether he/she is fit to stand trial (i.e. understands the significance of the trial on his/her life) and is fit to plead (i.e. understands what pleading means, understands the nature of the charge and the court process). Depending on the laws of the respective country, these may be issues that are examined formally and expert evidence from a psychologist or psychiatrist might be requested by the court or may be arranged by the person’s lawyer to determine the person’s capacity. If there are concerns about the person’s competency, the courts may decide not to continue and a different course of action may be suggested. Whether or not, and how, these issues are addressed will be very dependent on the laws of the country but these are sometimes critical periods in the criminal justice process where charges may be dropped or a different course of action is followed.
Seek guidance from the defense lawyer as to whether or not the person with PWS is able to understand the trial and will receive a fair trial. It may be helpful to obtain an independent expert opinion to determine whether the person with PWS is likely to understand the trial process. Depending on the laws of the country the court may decide not to proceed with a trial and a different course of action is followed. In some countries a person deemed incompetent to stand trial may be sentenced to a special prison where they are taught about the court process so they can become competent to stand trial.
Proper legal representation before and during court proceedings is essential, ideally from a lawyer who is willing to learn about PWS and has experience in the field of disabilities in general. Through good legal representation and support to understand the proceedings the person with PWS has the best chance of receiving a fair trial.
The person with PWS should be supported throughout the process as much as the court allows and should be helped to understand the proceedings, so as to reduce uncertainty and confusion.
A guilty plea or a guilty verdict: sentencing
A person may decide on legal advice to plead guilty and the court will then proceed to sentencing. If he/she decides to plead not guilty then the court hearing will commence. There will be difference between countries but in general it is for the court to determine beyond reasonable doubt two factors: first that the alleged offence (hitting someone, stealing food) happened (referred to in some jurisdictions as actus reus), and secondly, that it wasn’t simply an accident but the act was done with intent, or was a result of recklessness and should have been foreseen (referred to in some jurisdictions as mens rea). Depending on circumstances magistrates or a jury will listen to the evidence and arrive at a judgement.
In considering sentencing the options will vary between countries and may vary depending on the type of court. The court may seek expert or other evidence that will help the Magistrates or Judge to arrive at an informed and fair sentence – referred to as evidence in mitigation. Where someone is known to have a medical condition (PWS) this may influence the court. The issues the court will consider are the protection of the public, if the person is considered likely to behave in a dangerous way again, the need for punishment so that victims feel justice is done, and any special factors like the need for psychiatric treatment as opposed to punishment. Options may include a fine; a probation order sometimes with conditions as to where to live in the community and agreeing to supervision; imprisonment; or diversion from the criminal justice system to, for example, a specialist hospital. A positive outcome may be that the court decides someone can return to live, for example, in a supervised setting in the community where any risk of re-offending is reduced through the supervision he/she will receive.
Depending on the legal system the prosecution lawyers will be required to prove that the person committed the act he/she are alleged to have committed and that they intended to do it or they were reckless in committing the act and it should have been prevented.
If pleading guilty or found guilty the court may seek evidence in mitigation such that a more lenient or different sentence can be justified.
Courts must consider various factors when determining sentence including possible future risk to the public and the seriousness of the offence, as well as support options available in the community.
Courts may have the option to divert someone from the criminal justice system to a supervised setting in the community or to the care of health staff so that they can receive treatment.
If someone with PWS is repeatedly engaging in very difficult behaviour and is refusing to accept support (for example to live in a food secure environment) the involvement of the courts may enable interventions that are of benefit to the person concerned. For example, through a probation order the courts may stipulate that the person must live at a particular place where access to food can be controlled and appropriate and informed interventions can more effectively bring the person’s behaviour under control.
If the criminal justice system is involved what then happens will be in the hands of the police and/or the Courts. You can best help in two ways: first, be there for the person with PWS and support them at each step in an informed way, and secondly, keep lawyers and others in the criminal justice informed in the belief that they will then use this knowledge to get the best outcome.
Law Enforcement Matters
Regarding People with Prader-Willi Syndrome
Prader-Willi syndrome(PWS) is a complex, multi-stage genetic disorder that impacts the thinking, understanding, satiety, sensation and behaviour of affected children and adults. Most commonly it is identified by an uncontrollable drive to eat and the inability to perceive fullness or satisfaction with the amount of food or beverages consumed. In people with PWS the hypothalamus of the brain, which regulates hormones, does not work as efficiently as it should.
There may be times when law enforcement agencies become involved in their life, usually due to disruptive or violent behaviour, either at home or in public.This guideline is to assist law enforcement personnel in their knowledge of PWS.
People with PWS can display the following behaviours as a direct result of how the brain works in PWS, not because they are wilful or have criminal tendencies.
Stealing food or other consumables and/or money (as a way to access consumables)
People with PWS demonstrate an insatiable drive for food, beverages and cigarettes, if they are smokers. They constantly seek more of anything that is a consumable. This can include, fresh, scrap, frozen and rancid food, which may result in food poisoning, diarrhoea or stomach upset.
It is the responsibility of their caregivers to provide a “safe” environment that prevents access to food, beverages, money or cigarettes, that are not planned for the person but this is not always achieved.
Once food, money or a saleable item is taken, it may be very difficult to remove it from the person with PWS. Proving they have stolen something may be equally difficult to prove and accusing them of the theft will usually result in denial.
Calm, matter-of-fact discussion about the situation is encouraged. Raised voices, threats or accusations will usually cause the person with PWS to become defensive, anxious, argumentative and possibly aggressive.
Verbal or physical behavioural outbursts
If a person with PWS perceives an injustice to himself/herself, does not understand what is being repeatedly asked or told to him/her, or feels he/she is not being given a choice, behaviour may escalate to a point of temper outburst or tantrum. People with PWS have poor reasoning skills, they are not good at solving problems nor are they competent in comprehension or expression of thoughts, words, or feelings.
Physical damage can be caused by a person with PWS who is experiencing a temper tantrum or when they are attempting to access food, which they are being denied.
They are anxiously trying to satisfy the constant drive to consume. If an outburst escalates to a point of extreme distress, then the person is best left to work their way through the outburst, while their safety and the safety of those around them, takes precedence. At such a point the person with PWS is usually deemed to have diminished mental responsibility and cannot be reasoned with or consoled.
Absconding from a situation is common and at such times people with PWS can be at risk of accidental or deliberate harm. They may be running away from “being in trouble”, “being cornered” or in the pursuit of consumables. Chasing or calling out to a person at this time will only accelerate their anxiety and fleeing, placing them at greater risk of injury or accident.
Confabulating stories and incriminating others
People with PWS often create stories as a means to achieve something they want or believe to be correct. The stories can become reality to them and sometimes the verbalisation of, or acting upon these stories, may incriminate or harm themselves or other people.
Confabulation, as seen in people with PWS, is defined as a memory disturbance in which a person confuses imagined thoughts and events with actual memories or reality. There is no intent to deceive, as the person believes it is true or real. This can include believing they have been abused, loved, invited, partnered, are in danger or are meant to be somewhere else. It is essential to investigate any stories you believe may be inaccurate, any proposed actions and any accusations made about others, before acting on what a person with PWS reports, especially if it may have serious consequences.
Confabulation may also be an indication of a developing or escalating mental illness, such as psychosis or severe depression. Bizarre thought patterns, hearing voices or experiencing hallucinations, increased or out of character aggression are clear signs that need to be psychiatrically assessed.
Making regular contact with emergency services
As well as being prone to increased anxiety, people with PWS are easily excited and can overreact. Being upset with a parent or carer or friend, may cause them to dial emergency services – police, ambulance, for no serious reason. If they have had a pleasant experience that includes consumables, as a result of an emergency service intervention, (for example, are given a cup of coffee and biscuits) this may be interpreted as a reward that encourages repetition of the action. People with PWS often appeal to a higher authority, like police, ifthey believe they have been wronged in some way or if they think another person is acting in an unlawful way.
Self-harm such as scratching, skin picking, or pulling out hair or nails
These actions are often the result of increased anxiety, agitation or boredom and can result in the appearance of open sores and scars on any part of the body. People with PWS may look as though they have been physically abused or are infectious and diseased. They can bruise and bleed more easily, causing a small injury to appear worse than it actually is. It is important to be aware of this behaviour should a case of abuse or neglect be suspected or under investigation.
Each person with PWS will present differently, with varying levels of cognition and ability.
Due to how they think and react:
Remain calm and confident when communicating with the person
Use fewer and simple words without double meanings, in a low gentle voice
Do not accuse, threaten or make false promises
Have a trusted, responsible adult, with good knowledge of PWS, present when you speak with them
Avoid offering them or having any high energy consumables while they are with you
Physical restraint may cause breathing problems and injury without complaint, as people with PWS have a high pain threshold and often, poor circulatory and respiratory health
Many adults with PWS will have guardians appointed by the court to assist them in their decision making about food, money, medical issues and of course, decisions involving the legal system.If the person with PWS is involved in a crisis, especially involving a hospital or the police, it is vital to contact the guardian to assist both the person and the community helpers to manage the situation as optimally as possible.
For further information about PWS please contact IPWSO.
Tony Holland and Georgina Loughnan