Introduction
This Practice Guide sets out key principles and recommendations on parenting support for parent carers of disabled children and young people and those with special educational needs (SEN) aged 0 to 25. It relates to all outcomes of the Children’s Social Care National Framework. The enablers of the National Framework (leadership, workforce, multi-agency working) have a role in supporting delivery of this Guide’s key principles and recommendations.
This Practice Guide has been produced to support senior leaders, practitioners and practice supervisors in local authorities to inform and improve the commissioning and delivery of parenting support for disabled children and young people and those with SEN, in order to drive effective local practice and improve outcomes for these children and young people.
This summary online version complements a full version of the Practice Guide.
Parenting a disabled child or young person can be rewarding but often requires intensive, targeted support throughout childhood and sometimes into adulthood. This support is often different from that needed by other families.
This Practice Guide is based on findings from a robust review of the existing evidence, including findings from an umbrella review, meta-analysis, and qualitative meta-synthesis. It also incorporates practitioner insights and the lived experiences of parent carers to identify support that is both effective and useful, with a positive impact on parent carers and children and young people.
For more information about current policy, and the relevant frameworks and guidance related to this Practice Guide read the Policy overview.
Language
In this Practice Guide, identity-first language (e.g. ‘autistic child’) is used throughout to recognise that disability is not something which is caused by the individual. We have adopted the social model of disability to recognise the discriminatory attitudes and social or environmental barriers which disabled people face.
Throughout, when reference is made to ‘disabled children and young people’ this is inclusive of children and young people with special educational needs. We recognise that although children and young people with special educational needs may fall within the Equality Act 2010, they may not identify as being disabled.
Where the term ‘children’ is used this refers to people 0 to 17 years old. Where the term ‘young people’ is used this refers to people aged 18 to 25 years old, unless otherwise stated.
What do we mean by parenting support?
This Practice Guide defines ‘parenting support’ as structured interventions, programmes, and services aimed at supporting parent carers of disabled children and young people. It includes interventions with clear eligibility, structure, and activities, but excludes unstructured supports such as informal home visits or therapies without a defined approach.
Support related to long-term health conditions is outside the scope of this Guide, as are the unique challenges faced by parent carers experiencing multiple adversities themselves. For guidance on these issues, please see the Parenting through Adversity: Parents of babies & children aged 0 to 10 Practice Guide.
Read the Extended definitions for more detail.
We would like to acknowledge the invaluable input of our Advisers who worked closely alongside our Guidance Writing Advisory Group and whose contributions have greatly enriched this Foundations’ Practice Guide: Kiefer Bird; Lisa Coffman, Barnet Parent Carer Forum; Dr Jeri L. Damman, University of Sussex; Peter Houlders, East Sussex County Council; Stuart Sawyer, Suffolk County Council; Annabel Smith, Hertfordshire Partnership Foundation Trust; Caroline Coady, Council for Disabled Children.
We would also like to thank the research team at the Anna Freud Centre for their meticulous work on the Umbrella reviews and to the members of their Parent and Carer Advisory Group for their invaluable insights.
