Lisa Coffman is a member of two advisory groups for the latest Practice Guide produced by Foundations, which draws on a review of the research carried out by a team at Anna Freud and UCL. Lisa reflects on the critical role of parent carers in shaping the guide.
As a parent of a disabled child, I know first-hand that no one understands the complexities of parenting a disabled child better than those who live it every day, and no one understands better what support these children need to navigate these difficulties.
That’s why I was delighted to be asked to be part of the team led by Professor Nick Midgley at Anna Freud, a mental health charity for children, young people and families, who were commissioned by Foundations to carry out a review of parenting support for parent and carers of children and young people aged 0 to 25 years old with a range of disabilities, including special educational needs (SEN). Anna Freud’s report of the evidence review forms the basis of the new Parenting Disabled Children and Young People Practice Guide produced by Foundations and commissioned by the Department for Education (DfE).
Although I am an experienced parent carer representative, frequently advocating for parents and carers in my local authority and with the Department of Education, this was the first time I held dual roles. I wore two hats, both as a member of the research team and the lead for Anna Freud’s Parent Advisory Group – as well as being a member of the advisory group for this Practice Guide. Given my own lived experience of parenting interventions, I hugely welcomed guidance for commissioners, local leaders and practitioners on the design and delivery of support for parents and families in this area.
I really appreciated the importance placed on the involvement of our parent carers in both the research and the resultant guide. It was vital that the research team were able to put their findings into context and better appreciate what these interventions meant to families like mine, whilst acknowledging that all families face different challenges and have varying experiences depending on their own circumstances.
Among the questions we worked through in Anna Freud’s advisory group meetings were:
- What did we understand by the term ‘parenting’ in this context, and should we include interventions for example, that cover wider family (such as grandparents) or kinship carers? We concluded that they should.
- In the experiences of the group, what factors helped make parenting interventions more likely to succeed and what were the barriers to successful outcomes?
- How to agree sensitive preferred language to be used when talking and writing about children with disabilities/disabled children.
To discuss these and other issues meant creating a space in the advisory group where parents could speak openly and honestly about their experiences. Some had children, or were responsible for children, with visible disabilities, others had autistic children or children with hidden needs including chronic illness. The diversity of our group was one of its strengths, but also a reminder of just how different each family’s journey can be, and how important it is to provide tailored support at the right time.
Our conversations in the advisory group became central to our understanding of the research issues at stake and of the diverse perspectives of parent carers, and they helped us to refine the approaches taken by the research team and the shape of the finalised guide.
This experience has taught me that involving parents isn’t just beneficial, it’s essential. When we bring the voices of those who parent a disabled child into research not as participants, but as partners, the work becomes richer, more ethical, and ultimately more impactful. Above all, it results in guidance that is more likely to work for families and professionals alike.
I am so proud of the work we have done on this project and the Practice Guide. I feel confident that it will have a significant impact going forward and help support families at a time of need. From a personal perspective, I have learnt so much from the experience, not just growing my understanding and appreciation of the huge amount of work that goes into producing a guide such as this, but also in recognising the importance of co-production and the parent carer voice. I am hugely grateful for the experience.
I’d like to urge partners in local authorities to read the guide, and work together with parent carers, Foundations and partners, and national stakeholders to put it into practice in local communities, so that together we can give parent carers and disabled children the support that they need and that we now know works.