New report launched, 'Seen, Heard, Included' exploring tools and methodologies to support meaningful engagement and participation.

Towards the end of 2022, a sub-group was created from the Disabled Children and Young People Advisory Group (DCYPAG)* to explore tools and methodologies to support the meaningful engagement and participation of disabled children and young people whose needs are complex and whose voices are rarely heard, and their families, and share learning on these approaches.

To capture what matters to this cohort of disabled children and young people and their families within the context of effective planning and effective support, and to contribute to the design and development of the National Care Service and the National Transitions to Adulthood Strategy.

Funded by the Scottish Government; the ALLIANCE, Contact, Down’s Syndrome Scotland, Family Fund and PAMIS came together to carry out engagement activities and our learning report has now launched: Seen, Heard, Included.

Below you can find additional outputs from delivery partners who engaged with children, young people and families. Please take the time to have a look over at the amazing work that has been produced.

Key themes to support meaningful engagement and participation includes:  

  • Review existing evidence
  • The importance of existing relationships and trust
  • Person-centred and whole family engagement approaches
  • Time
  • Communication and feedback

The sub-group plan to continue work with the Scottish Government to consider wider dissemination of the findings of this report, to shine a light on good practice and appropriate ways to engage with disabled children, young people and families in designing policy. We want to work together with our wider networks to act as advocates on their behalf in highlighting what works and what can be done better.

Contact Reporting
Down’s Syndrome Scotland Reporting
Family Fund Reporting
PAMIS Reporting

If you have any similar resources that you wish to share or feedback on our learning so far, please get in touch with Marianne Tyler, Senior Development Officer for Children and Young People at the ALLIANCE by emailing

*DCYPAG is a forum created to share intelligence and expertise to the Scottish Government on issues which impact upon disabled children, young people and their families.

A research project commissioned by the ALLIANCE exploring disabled children's and young people's access to support during COVID-19.

In August 2022, the ALLIANCE’s Children and Young People Programme published a commissioned research project exploring disabled children’s and young people’s access to support during the COVID-19 pandemic.

The research was undertaken by Dr Liliana Arias-Urena (University of Edinburgh) over the course of three months. Drawing on children’s, young people’s and parents’ own accounts, the study explores the impacts of the pandemic on access to health care, social care services, state entitlements and supports in Scotland.

Five families with children and young people living with different types of long term conditions, or experiencing particular care needs, were interviewed over three online sessions between March and May 2022.

A video summarising the project, research findings and recommendations can be viewed on our YouTube channel.

Any questions?

If you have any questions, please get in touch with our Children and Young People team by emailing

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