In late 2020, the Advocate for Children Young People (ACYP) shared their first report dedicated exclusively to the unique lived experiences of young people with disability. They asked 370 children and young people with disability across NSW:

• What is working well for you and other children and young people in NSW?
• What is not working well for you and other children and young people in NSW?
• What would you like to change to make NSW a better place for children and young people?

Seven key themes emerged from the children and young people’s responses, including Education, Health and the National Disability Insurance Scheme, Access and Inclusion, Voice and Participation, Employment and Training, Discrimination and Bullying and Mental Health.

In this blog, I will concentrate on what we can learn from these young people in relation to participation in the out of home care space. In reading the report, one young person’s response to the question of “What could be done to make NSW a better place for children and young people” stood out for me.

In residential care in NSW, young people often report that they don’t usually get to have a say or feel listened to (NSW Department of Communities and Justice, 2019). And while young peoples’ needs and strengths differ, their rights to participate in decisions that impact their lives do not. In our recent research briefing on youth participation, Vosz, McPherson, Parmenter and Gatwiri highlight how young people with intellectual disability and complex trauma are more likely to experience placement instability in residential care, and face multiple barriers to accessing information, being involved in decision-making, and the supports they need to communicate their views.

Given the societal and relational barriers children and young people with disability often experience, we as professionals have a greater responsibility to be aware of and utilise trauma-informed principles when working with children and young people with a disability.

So, in this context and in using a trauma lens, what might “Just ask Us” mean from the perspective of a young person with disability:

• Just ask Us: Sit with me, connect with me, build safety with me and I will open up and tell you what I need
• Just ask Us: Respect me. Respect my human right to have a voice and an opinion. Respect the fact that its likely no one has ever just asked me my opinion before
• Just ask Us: Don’t underestimate me and my capacity. Believe in me, see me as a person with a story, with a perspective of the world. Not just a label or a diagnosis
• Just ask Us: Be curious, be open, be flexible, be creative in how you engage me. Help me to share my voice through our relationship with one another

Key messages from the ACYP report related to the participation of children and young people with disability

• Children and young people found taking part in decision-making forums made them feel empowered, and improved their confidence and self-esteem
• Children and young people value workers that build a positive relationship with them by listening to what they want and need
• Children and young people emphasised the value of listening to people with lived experiences of disability
• A range of good practice example used to amplify the voices of a child and young people were mentioned including; youth councils, student representative councils, youth advisory councils and youth reference group

How do we make a difference in the lives of children and young people with disability?

We make a difference: through our relationship

Wondering about what happened to the young person, as opposed to what is wrong with them and helping their support network to have the same outlook

Respecting them. Respecting their opinion, their perspective, the way they see life, their humour and playfulness, their seriousness and resilience

Remaining calm and regulated and attuned to the young persons arousal states

We make a difference: through our meaning-making of their needs

Observing them, getting to know their communication styles, verbally and non-verbally

Clarifying and/or paraphrasing their needs to ensure we have them right

Using appropriate fonts and sizes when using written communication

We make a difference: through using evidence-based practices

Cognitive behavioural approaches have demonstrated effectiveness with processing trauma in the disability population

For the majority of the disability population focusing on skill and resource development is more important than processing traumatic events

Always screen for trauma and/or abusive incidents in a young person’s story

We make a difference: through using an ecological perspective

Wrapping a Child or Young Person in familial and professional support to help them navigate their life should be a priority as we will not always be in their life.

References

Office of the Advocate for Children and Young People [ACYP]. 2020. Voices of Children and Young People with Disability Report. Retrieved from: https://f.hubspotusercontent20.net/hubfs/522228/docs/ACYP-the-voices-of-children-and-young-people-with-disability-2020.pdf

Centre for Excellence in Therapeutic Care [CETC]. 2020. Enabling Young People’s participation in Residential Care Decision Making. Retrieved from: https://cetcprod.wpengine.com/wp-content/uploads/2022/07/youth-participation-research-brief.pdf