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In focus: Child mental health and disability

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Children with disability, like all children, can and do experience positive mental health. But research shows they are also at greater risk of experiencing mental health difficulties (Buckley et al., 2020; Downs et al., 2018; Sawyer et al., 2001). Many aspects of society are not designed to accommodate people with disability, which can place additional pressure on children and families and increase their chances of isolation. Certain factors associated with childhood disability can also make it harder to spot the signs of mental health concerns.

Children with disabilities are more likely to present to services for help with bullying, trauma, isolation and associated mental health concerns. With approximately 7% of Australian children under the age of 14 currently living with a disability (Australian Institute of Health and Welfare, 2020), it’s important for practitioners in all settings to feel confident to work in disability-aware ways.

Meeting the needs of children with disability can be complex and challenging at times. But a sense of curiosity and a willingness to look beyond the child’s disability to understand their unique strengths, skills and hopes will support you in this work.

Changing the way we think about disability

Practitioners who effectively support mental health develop contextual and holistic stories of the child’s world. This means moving beyond a medical description of the child’s limitations to a social understanding of key relationships, abilities and strategies that help them to engage.  Traditional models of disability care focus on diagnosing, managing and treating disabilities. The goal is to help children function as ‘normally’ as possible. But while a child’s disability does not define them, it is a part of their identity. Negative attitudes towards disability can impact a child’s self-worth, leading them to believe that they’re ‘wrong’ and need to be ‘fixed’ (Office of Developmental Primary Care, n.d.).

In contrast, the social model of disability looks at how the child can be supported to participate meaningfully in their day-to-day life. It’s about finding ways to overcome physical and social barriers to participation, rather than fixing any functional impairments associated with the child’s disability. It focuses on the child’s strengths and skills and the family’s hopes for their child, while also acknowledging the unique challenges they face as a result of the child’s disability. It also recognises the many ways children and families have found to overcome these challenges, and that these are important stories to share.

In the following video (1 minute, 8 seconds), Jacqui talks about her hopes for her daughter, Tahliyah.

The social model of disability requires curiosity and respect. It asks you to acknowledge that a child’s disability is just one aspect of their life. It doesn’t define them, but it does mean that they may, at times, need extra support to achieve their goals. This approach also recognises that each child and family’s experience of disability is unique and needs to be treated as such. Children and parents are the experts in their own lives, and need to be given space to talk about their experiences, feelings and concerns. This approach will help you to avoid pathologising normal aspects of a child’s development, and to instead work with their developmental stage.

The following information will help you to avoid slipping into a deficit-focus in your work with children with disability and their families.

A child’s disability is just one aspect of their life. It doesn’t define them, but it does mean that they may at times need extra support.

Looking beyond the child’s behaviour

Many children with disability find it hard to communicate in ways that adults can easily understand and respond to. Instead, they rely on their behaviour as a way of expressing their emotions and needs. Sometimes it’s easy to understand what a child’s behaviour is trying to tell you, and sometimes their intentions are less clear.

These behaviours are often labelled as ‘challenging’ or ‘behaviours of concern’, and can have a significant impact on the child’s learning, development, safety and wellbeing (National Institute for Health and Care Excellence, 2015). Often, they result in greater disconnection for the child (Buckley et al., 2020), and the message they’re trying to get across is lost.

Not all challenging behaviours are a sign of emotional distress. But a child’s mental health concerns can be easily overlooked when the adults around them assume that their disability is the cause of their behaviour. This is known as ‘diagnostic overshadowing’, and is more likely to occur if you’re following the medical (as opposed to the social) model of disability care.

Understanding how a child communicates their needs is an integral part of supporting both them and their family. You want to learn as much as possible about the child’s communication skills from the people around them:

  • How does the child best understand information?
  • How can you communicate information in a way that’s going to be meaningful to them?
  • How does the child best express themselves?
  • What supports do you need to put in place to support their communication in your work together?

With this knowledge, you can plan activities and assessments that will effectively engage the child. From there, you can help the people around them to identify the potential reasons behind any challenging behaviours, along with support strategies. You can also help the child to develop ways to overcome any communication barriers and express their needs safely and effectively.

In the following video (1 minute, 9 seconds), speech pathologist Kate Headley discusses some of the things to keep in mind when adopting a communication-focused approach in your work.

Understanding how a child communicates their needs is an integral part of supporting both them and their family.

Supporting the whole family’s wellbeing

Children’s mental health is strongly influenced by the quality of their close relationships. This is especially true for children with disability, who can be more reliant on their family to support their needs and ambitions. Supporting the wellbeing of the entire family is a critical part of fostering positive mental health in a child with disability.

While the child should always be at the centre of your work, it’s important to acknowledge the significant contributions that parents, caregivers, siblings and other loved ones make to the child’s life. It’s important to understand each family member’s strengths, hopes and challenges, as well as the family’s context. How do they cope with challenges? Who can they turn to for support when they need it? You can make a difference by showing compassion for the experiences of all family members, responding to their concerns and priorities, and respecting their perspectives and choices.

For example, many parents find it hard to see how their child’s behaviours and traits are misunderstood by the world around them. And when faced with behaviours that are difficult or don’t make sense, it’s common for parents to feel like they themselves are doing something wrong. You can help parents to recognise when they’re being too hard on themselves. Often, they’re doing so much to support their family that they forget to take a step back and see all that they’ve accomplished. Helping parents to stop, reflect on the progress their family has made, and reframe their perspective of their parenting is a key part of supporting the whole family’s wellbeing.

It’s also important to keep in mind that when families seek support, they’re usually feeling stretched already. They may not have the capacity to make the changes or take on board all the strategies you suggest. This doesn’t mean they’re not willing to do the work, or that they don’t think those suggestions would be helpful. Once you understand the family’s circumstances and collective and extended capacities, you can work together to figure out what is achievable at that point time.

In the following video (1 minute, 17 seconds), child psychologist Sara McLean shares some of the important things to keep in mind when working with the family of a child with disability.

Overall, the aim of family-focused practice is to be more responsive to the family’s unique situation and to organise the support they need to maximise their child’s development and wellbeing. When a family’s needs are supported, they’re better able to support their child’s needs.

When a family’s needs are supported, they’re better able to look after their child’s needs.

Building a team around the child

Families will often invest a lot of their time and energy in figuring out what supports their child needs. This can mean the parents of a child with disability feel more like their case manager than their parent. Professionals have a role to play in helping families to build and strengthen their resources and connections. Working with families to form a ‘team’ around the child will help to lighten this load, creating space for parents to focus on their parenting role.

The first step is to look at the child’s circles of support and determine what each of those circles can reasonably influence (Edser, Bullus & Headley, 2022). This will help you and the family to identify the most effective plan. Consider whether systemic supports may be more helpful than individual ones – for example, a school-based program on inclusion and diversity, rather than individual psychotherapy for the child.

The people in a child’s team will need to understand the child; make use of their passions, preferences and talents; and be willing to work together to help the child live their best life. Good communication is key and will make it easier to identify the areas of a child’s life where they need the most support.

Working with families to form a ‘team’ around the child will help parents find the space to focus on their parenting role.

Children with disability can and do thrive, despite the many societal and systemic barriers they face. Focusing on a child’s interests and passions and integrating these into your practice is the most powerful way to connect with a child with disability. And by taking the time to understand the family’s unique circumstances, you can work more effectively together to achieve positive outcomes for the child.

Promoting the family’s sense of agency and strengthening their social and community networks will bolster their ability to support their child’s mental health, during the good times and the bad. Altogether, these small strategies can make a big difference to the mental health and wellbeing of children with disability and their families.

Resources

Online course: Understanding child mental health and disability Online course: Child-centred and family-focused practice with children with disability Online course: Child-centred and communication-focused practice with children with disability Webinar: Practice strategies for working with children with disability Webinar: What is the social model of disability and why is it important? Research papers: Fetal alcohol spectrum disorder (FASD) Podcast: The team around the child: A mum’s story of her son’s neurodiversity Podcast: Autism, neurodiversity and child-centred practice Podcast: Parent voices: Supporting children with disability Fact sheet: Working with Aboriginal and Torres Strait Islander families and children living with disability

References

Australian Institute of Health and Welfare. (2020). Australia’s children. Canberra: AIHW.

Buckley, N., Glasson, E. J., Chen, W., Epstein, A., Leonard, H., Skoss, R. … Downs, J. (2020). Prevalence estimates of mental health problems in children and adolescents with intellectual disability: A systematic review and meta-analysis. Australian & New Zealand Journal of Psychiatry, 54(10), 970-984. doi:10.1177/0004867420924101.

Downs, J., Blackmore, A., Epstein, A., Skoss, R., Langdon, K., Jacoby, P., … Glasson, E. (2018). The prevalence of mental health disorders and symptoms in children and adolescents with cerebral palsy: a systematic review and meta‐analysis. Developmental Medicine and Child Neurology, 60(1), 30-38.

Edser, B., Bullus, E., & Headley, K. (2022, July). Practice strategies for working with children with disability. [Webinar]. Adelaide: Emerging Minds and Mental Health Professionals’ Network (MHPN).

National Institute for Health and Care Excellence. (2015). Challenging behaviour and learning disabilities: Prevention and interventions for people with learning disabilities whose behaviour challenges. NICE guideline (NG11). London: NICE.

Office of Developmental Primary Care. (n.d.). Medical and Social Models of Disability. [Web page]. San Francisco: Office of Developmental Primary Care, UCSF Department of Family and Community Medicine.

Sawyer, M. G., Arney, F. M., Baghurst, P. A., Clark, J. J., Graetz, B. W., Kosky, R. J., … Zubrick, S. R. (2001). The mental health of young people in Australia: Key findings from the child and adolescent component of the national survey of mental health and well-being. Australian and New Zealand Journal of Psychiatry, 35, 806–814.

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