This guide provides practical advice for professionals working with babies, children, and young people with disabilities. It highlights their rights, explores why they may face increased risks of harm, and offers strategies to safeguard and support them while promoting independence and dignity.
Introduction
This guidance has been prepared in conjunction with a group of first line practitioners and managers from across Perth and Kinross. The CPC is sincerely grateful for their work in putting together this guidance which is aimed at raising awareness of the additional protection needs of babies, children and young people with disabilities and emphasise the importance of safeguarding in this area of work. This guidance should complement, not replace, any existing single service and/or agency guidance.
Our values
We firmly believe that babies, children and young people with disabilities have the same rights to grow up free from abuse, neglect and exploitation as all babies, children and young people in Scotland do. The incorporation of the United Nations Convention on the Rights of the Child (UNCRC) into domestic laws in Scotland in 2024 provides additional emphasis on the rights of babies, children and young people with disabilities and the duty on services to promote and uphold them. Article 23 of the UNCRC is clear that:
"Every child with a disability should enjoy the best possible life in society. Governments should remove all obstacles for children with disabilities to become independent and to participate actively in the community." (Child-friendly version of UNCRC).
To this end, all practitioners who work with babies, children and young people with disabilities must guard against viewing them through solely through the lens of their disability. Babies, children and young people with disabilities have a right to enjoy their childhoods, have opportunities for play and friendships and for their views to be sought and shared. It is our responsibility, in partnership with parents and carers, to promote the rights of babies, children and young people with disabilities and ensure they have the opportunities they need throughout their childhood.
Definitions - what do we mean by children and young people with disabilities?
The Equality Act (2010) refers to disability as having a 'physical or mental impairment' which has a substantial and long-term adverse effect on their ability to carry out / engage in normal day-to-day activities.
The National Guidance for Child Protection in Scotland (2021-updated 2023) notes that the term 'disability' covers a broad range of physical, emotional, developmental, learning, communication and healthcare needs. It includes hidden disabilities.
This guidance considers the additional child protection risks faced by those babies, children and young people who are affected by moderate to severe disabilities and who may have complex needs. This includes babies, children and young people with life-limiting conditions.
Why are children and young people with disabilities at increased risk of harm?
Unfortunately, children and young people with disabilities and complex needs are known to be at higher risk of harm, including physical and sexual abuse, neglect and exploitation. There are a number of reasons for this including the 'invisibility' of children and young people with disabilities, the increased pressures on parents and caregivers in caring for a child or young person with disabilities and complex needs, the need for personal care and their capacity to communicate. These are discussed in turn below.
Making sure that children and young people with disabilities are seen and heard
When a child or young person has disabilities, there is a risk that they become less visible to practitioners. This could be through practitioners tending to engage more with their parents or caregivers, particularly where the child or young person is non-verbal, has communication needs and/or the parent or caregiver is the main interpreter of the child or young person's method of communication for others. This means that an intentional and skilled approach is required from practitioners to ensure that the child or young person is being genuinely seen and heard.
Practice Tip: Practitioners need to spend time with the child or young person getting to know them and if at all possible, this should include spending time with the child or young person in different environments, such as home, school and social settings to better understand their needs. Finding ways that the child or young person can communicate their needs is key - this might be through conversation, play, communication aids or careful observation. Practitioners should take time to speak with those who know the child or young person really well, such as their teacher, to understand how they normally present and what indicators of changes in their presentation may be.
Parenting a child or young person with disabilities
Parenting or caring for children and young people with disabilities and complex needs can bring many rewards but also many challenges. Children and young people may be born with disabilities, complex needs and life-limiting conditions or they may develop them later through accidents, illness or injuries. Emotionally, the parents or caregivers may experience grief for the future they had envisaged for their child and their family. Practically, living in a world which is not well-equipped to meet the needs of children, young people and adults with disabilities and complex needs makes parenting harder. Parents of children and young people with disabilities may feel isolated within their communities, perhaps unable to ask a friend or family member to babysit due to the complexity of their child's needs, or wary of taking their child out to places in public due to their needs or worries about how their behaviour may be perceived.
Providing care for a child or young person with complex needs or disabilities is significantly more demanding of parents' physical, emotional and financial resources than caring for a child or young person without these conditions. Caring responsibilities can be very wide and may include feeding, toileting, bathing, personal care, providing oxygen or suctioning, physiotherapy exercises, supervision and responding to and managing distressed, violent or aggressive behaviour.
There are many unseen costs in caring for children and young people with disabilities. Ensuring they have the nutrition they need, that the family home is warm enough for them, there is hot water for personal care needs and electricity for washing and drying clothes and sheets, is all expensive. This increases the financial stress on the family.
Children and young people with complex disabilities are likely to have an ongoing need for care and supervision throughout their lives. There can be no expectation of substantially increased independence over time as for children without these conditions. Sleeping difficulties are common for children and young people with disabilities and/or it may be that medical care has to be provided at regular or irregular intervals overnight, leading to broken sleep for the parents and caregivers themselves, causing fatigue. There may be little opportunity to catch up on lost sleep.
This hidden load for parents and caregivers of children and young people with disabilities may take a considerable toll on their wellbeing, leading to stress and distress. When a parent or carer is under significant pressure, whether through caring responsibilities, living in chronic poverty, coping with mental health or addiction issues, the possibility of the child being harmed, neglected or their needs not being fully met is increased. It is important that a whole family approach is taken when supporting children and young people with disabilities.
Practice Tip: Acknowledging to and with parents or caregivers that they have their own needs and asking them about the impact of their caring role on their own health and wellbeing is important. Provide opportunities for parents and carers to talk and be heard. Think with them about how their support networks can be strengthened and what professional support they might need to do this. Parent carers are eligible for a carer assessment and to support under the guidance of the Carers (Scotland) Act 2016. A range of parent carer supports can be accessed in Perth and Kinross through PKAVS - see Parent Carers | PKAVS for further details.
Personal care/increased risks
Children and young people with disabilities and complex needs who are unable to attend to their own needs with respect to toileting or bathing, face additional risks. Being cared for in different settings such as home, school, short breaks facility or during an activity, means that, by default, a number of adults are involved in the child or young person's personal care.
Good practice in providing intimate care for babies, children and young people is that such care should be provided by a small group of people that they know well. However, within different environments, or through staff sickness or changes, their care may be undertaken by people who are not as familiar to them. Given children and young people who need this care may be more used to adults touching them in their private areas than other children and young people who do not require this care, they may not recognise that they are being touched sexually or abused.
It is very difficult for any child or young person to disclose that they have been abused but if the child or young person is non-verbal or restricted in their communication, they may be totally unable to disclose what has happened or is happening to them. This is likely to increase the risk of the child or young person being targeted by a person or persons with a sexual interest in children and reinforces the need for careful observation of such children and young people for changes in their behaviour.
Practice Tip: Practitioners must always follow the safe caring procedures in their place of work when attending to a child or young person's personal care needs. Wherever possible, children and young people's consent should be sought before intimate care is provided. It is good practice that children and young people receive intimate care, wherever possible, from people who are known to them. Practitioners should talk and explain to the child or young person what they are doing and why during personal care tasks. Finally, practitioners should always encourage the independence of children and young people as much as possible, in accordance with their care plan and not do things for them that they could be supported to do themselves.
Increased risk of injuries
Babies, children and young people with disabilities may be at higher risk of injuries. This could be through an unsteady gait, seizures, conditions or medications which making bruising more likely. Some children or young people may be violent towards others at times and have to be held to prevent serious harm from being caused and other children or young people may hurt themselves through headbanging or hitting themselves. For this reason, discerning accidental injuries from non-accidental injuries can be more difficult than for children and young people without these issues.
Any or all bruising or injuries on babies, children and young people must be documented and explored further to ensure that it has not been deliberately caused.
Over-protection and under-protection
Parents, carers and caregivers face complexity when assessing how able the child or young person is to manage the risks that all children and young people face as they navigate towards being more independent. This is because there are no standardised milestones or development pathways for children and young people with disabilities or complex needs, making supporting the child or young person to be as independent as possible more complicated to achieve.
Over-protection may happen when parents, carers or practitioners avoid the child or young person undertaking 'safe risk-taking'. This is a part of supporting all children and young people to learn life skills, along with allowing them to make some of their own mistakes. It can be harder for parents or carers to adapt to the stage of development of their child or young person when they continue to need high levels of care and support. This can complicate some of the 'tasks' of adolescence, such as the need for the young person to psychologically separate from the carer. If children and young people with disabilities are not supported to learn about what to expect and how to manage in different environments, the risks for them can increase exponentially when they become adults and may choose to go alone. Exploring new environments, like taking a bus or going to a café with a trusted adult can help build their confidence and understand where they can seek help, if needed.
Managing the high care needs of a child or young person with disabilities, at the same time as trying to build independence and facilitating the natural tasks of adolescence such as a level of separation from one's parents or carers, is likely to be complex for parents and carers and one that may benefit from extra support to navigate.
Under-protection, on the other hand, may happen where parents, carers or practitioners do not recognise the vulnerability of the child or young person with disabilities but may instead rely on their chronological age, for example, as a guide. This is also harmful as the child or young person may be placed in situations which they are developmentally and cognitively unable to manage - increasing risks of exploitation and abuse. For example, this could be allowing the child or young person to spend time out in the community for extended periods alone when they need supervision and support to be safe.
Practice Tip: Having a really good, risk-based understanding of the child or young person's needs is central to supporting their development and engagement with the world around them. Getting to know the child or young person, learning about them from others who know them well and our observations are a crucial part of this. Our aim for children and young people should always be that they are as independent as possible. This could range from signalling agreement for personal care being undertaken to using buses or choosing how to spend their money.
What other factors increase vulnerability for children and young people with disabilities?
Children and young people with disabilities may often have speech, language and communication needs and, as referenced above, this can increase risk. Parents, carers, caregivers and practitioners caring for or working with children and young people with disabilities need to be aware of some of the barriers to safety for them.
Impact of communication needs
A child or young person who is non-verbal or has limited communication may not have the language capacity to disclose what has been happening to them, rendering them even more vulnerable.
They may not have the words to describe what has happened.
Their communication devices or aides may not have the signs and symbols to allow them to describe what has happened.
The person who facilitates or interprets the child or young person's communication styles may be the same person who is causing them harm. This means that the person can easily block what the child and young person may be trying to communicate.
A child or young person who communicates their feelings through gestures, sounds or their behaviour may not be understood. Distressed or aggressive behaviour, for example, can be misinterpreted or seen as being a normal part of the child or young person's condition so not considered further.
Equally, practitioners need to be aware that they could be reading too much into or entirely misinterpreting the child or young person's behaviour. Understanding the child or young person's usual baseline and being aware of the issues in the day which may trigger responses is very important. Some children and young people with disabilities may have a tendency to agree with others, or to please them, and therefore practitioners must be very careful about the questions they ask the child or young person when exploring if something may be happening.
Impact of cognitive issues
Children and young people with learning difficulties or disabilities are more at risk of being coerced or persuaded to accept behaviour that is harmful to them such as sexual abuse. Difficulties with thinking about consequences, a desire to fit in with peers and to be part of the group can mean that the child or young person may accept behaviours which are abusive.
For these children and young people. their cognitive ability and capacity to understand and be aware of what is happening to them can be significantly reduced. For example, they may not recognise that extended touching of their genital areas in personal care is not appropriate. As with other children and young people, they may not recognise that even though something may feel nice, such as stimulation of genitals, it is still abusive. Perpetrators of abuse can use the ordinary bodily responses of children and young people against them as 'evidence' of consent.
Other barriers to safety
Children and young people with disabilities may be more isolated than children and young people who do not. Their reliance on others to transport them to school, college or activities means that contact with services can be avoided at times.
Children and young people with disabilities may have conditions like epilepsy through which they may acquire bruises on areas of their body. This can make it harder to detect indicators of non-accidental injuries.
Practice Tip: Practitioners must ensure that the people and practitioners who know them really well are consulted about the ways in which the child or young person can communicate that something is not right for them. This might be very subtle, from noises to gestures to their eye movements. Practitioners need to be alert to all the ways that a child or young person may communicate that something has changed or is troubling them. It is vital to hold space for different explanations of what may be causing a behaviour change in a child or young person with disabilities. Considering the context of the behaviour change, the different cues in their environment and, either as a person who know them well, or working closely with someone who knows them well, practitioners need to think through all possibilities to arrive at the most likely explanation. The child or young person's sensory profile and their communication passport should always be considered.
Understanding the role of sexual development
A further risk for children and young people with disabilities concerns their sexual development and how it may present as an individual or with respect to others.
Children and young people with disabilities may require additional support to understand their sexual development. Societal views and discrimination mean that young people and adults with disabilities may be infantilised and may be not viewed as sexual beings. Societal treatment of young people with learning disabilities, including overprotection, disempowerment and isolation may mean insufficient attention is given to providing information and space for discussion about healthy sexual relationships.
It can be difficult for parents, carers and caregivers of children and young people with disabilities to accept their growing physical maturation and to support healthy sexual development through discussion and providing information. Sometimes children and young people's parents or carers may choose to remove them from school-based sex education with the intention of protecting them from information they believe they may not be ready for or relevant for them. Staff working with children and young people with disabilities may not always have the materials, confidence or expertise to work through sex and relationships issues with young people with learning disabilities.
Ensuring that children and young people with disabilities are given age-appropriate information and education is essential in promoting their rights and supporting their longer-term sexual development. Parents/carers naturally play the most important role in supporting their child's understanding of their sexual maturation and development.
Increased risk of harm online
Children and young people with disabilities who are able to engage with the internet face additional risks. It may be that these children and young people are socially isolated and have limited peer relationships which increases the likelihood of seeking relationships or information about sex online.
Viewing pornography can give an unrealistic and potentially dangerous impression of sexual behaviour, gender roles and relationships. When children and young people are exposed to pornography, they may have increased difficulty in understanding the complexities of consent and healthy relationships. This is already challenging for children with autism and intellectual disabilities and can be made more difficult through viewing pornography. Similarly, viewing violent content creates additional risks for children and young people with disabilities.
Adults who may seek to exploit children and young people sexually can use the internet as a means to do and children and young people with disabilities may be especially vulnerable to being coerced into sharing sexual images or content.
Sexually harmful behaviour to others, including other children and young people
Young people with disabilities are more likely to experience sexual harassment and abuse both online and offline. Impairment-related factors can contribute to a range of difficulties including capacity to consent to sexual activity, reduced ability to recognise exploitation or risk, impulsive behaviours and needs associated with a different understanding of social cues, interaction and communication. A child's disability may make it difficult to use standardised guidance such as Hackett's sexualised behaviour continuum (Hackett 2010). A child's developmental ability should be considered alongside their chronological age and their stage of sexual development.
A significant proportion of children who display harmful sexual behaviour also have a learning disability but with the right support at the right time, these children will not continue to display concerning sexual behaviours as they become adults.
Children and young people with learning disabilities may repeat sexualised language they have heard without understanding the meaning of this. A strong reaction from others may reinforce this behaviour leading them to repeat it. Children and young people with significant learning disabilities may lack an awareness of the need for privacy when exploring their own bodies or masturbating. Some may use self- stimulation as a means of self-soothing or meeting a sensory need.
There can be a lack of recognition of the impact of learning disabilities, and this is further complicated where children and young people are also impacted by trauma. You can read more about the impact of trauma on the NHS Scotland website. Professionals may focus on managing problematic sexual behaviours without exploring the reasons for this and providing the appropriate foundational support.
Children and young people with disabilities may be more likely to develop friendships with younger age peers due to similarities in their social and emotional development. This can result in young people with intellectual disabilities and autism exhibiting sexually harmful behaviours towards younger children due to the lack of same age peers with whom they can begin to explore their sexual development.
Capacity/understanding consent
Children and young people require support to understand the law and consent. Many young people with autism and learning disabilities have capacity to make decisions in relation to participating in sexual relationships. It is important that young people with disabilities are provided with accessible information to support them in decision making. Information about consent is also plays an important role in helping children and young people with disabilities to recognise where they are subject to sexual abuse.
Talking Mats may be a useful tool to explore a young person's understanding of consent and healthy relationships for those who are able to engage with this communication approach. Other bespoke approaches will be needed for other children and young people depending on their preferred communication methods. Some children and young people may use or benefit from the use of Makaton, social stories and visual aids. There are also versions of the AIMS3 assessment for young people with autism which can be used by professionals with specialist training in this area.
How can we best support babies, children and young people with disabilities and keep them safe?
As with all children and young people, practitioners must strive to work with children and young people with disabilities in ways which uphold and promote their rights, ensure their dignity and enable them to live their lives as fully as possible. There are increased risks for children and young people with disabilities and practitioners need to be cognisant of these whilst balancing this with their need to be as independent as they can be. Risk is part of all of our lives and, if managed appropriately, can bring rewards - opportunities to meet new friends, have new experiences and enjoy what life has to offer.
For children and young people with disabilities, there are a number of things practitioners can do to support them in navigating their lives:
Ensure that time is spent getting to know the child or young person with disabilities, this could be through time spent with them directly and through spending time speaking with people who already know them well.
Make sure that the child or young person's communication style is known, respected and used. For example, if a child or young person uses a communication aide, make sure that they have it with them and it is used to support having conversations with them.
Understand the child or young person's routine, the parts of the day they find difficult and the parts of the day they enjoy. What are the signs that indicate the child or young person is stressed or distressed? What are the signs that they are relaxed and comfortable?
Ensure that a child or young person's bodily autonomy is respected, ask consent when supporting them with physical or personal care wherever possible - for non-verbal children and young people, they may be able to give consent through a physical sign or moving their eyes. Talk to the child or young person to explain what is happening and why.
Be alert to the behaviour of others around the child or young person, if someone is acting unusually, treating the child or young person differently to how they should be, raise a concern with the appropriate line manager.
Carefully record changes in the child or young person's presentation - physically and emotionally. Look for patterns of behaviour.
Hold different ideas in mind when presented with a change of presentation - be professionally curious and explore what the different reasons may be.
When working with vulnerable children and young people, it is important to remain balanced when considering different reasons that may have caused changes to the young person's behaviour or presentation, but practitioners must always endeavour to think the unthinkable. This means considering the possibility that someone has deliberately hurt or harmed the child or young person and may be trying to cover up what has happened.
Babies, children and young people with disabilities are entitled to, and fully deserve, the same level of care and protection as babies, children and young people without them. It is important that thresholds for babies, children and young people with disabilities are not higher than those without them. Early support and intervention is important to prevent lower-level concerns escalating to become child protection concerns. This requires open dialogue with parents, carers and the child or young person themselves.
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