Disabled children and young people

The evidence review for the Parenting Disabled Children & Young People Practice Guide adopted a broad definition of disability as laid out in the Equality Act 2010 section 6(1), which states a person has a disability if they have “a physical or mental impairment” and that impairment “has a substantial and long-term adverse effect” on the person’s “ability to carry out normal day-to-day activities”. Our definition of the families in scope for the umbrella reviews was broad and required refining in the drafting phase of the Guide.

When we refer to children and young people with special educational needs (SEN) we mean a child or young person who “has a learning difficulty or disability which calls for special educational provision to be made for him or her”, as per section 20(1) of the Children and Families Act 2014.

Keeping to the spirit of the Equality Act, we have adopted an inclusive definition which includes the parent carers of disabled children and young people with disabilities and those with special educational needs.

In the Practice Guide when we refer to disabled children and young people and those with special educational needs, we mean children and young people with moderate to severe and complex needs. This support can range from targeted early help through to more intensive specialist social care support, such as having a Child in Need plan in place.

Children and young people whose needs are met through universal support are not in scope for this Guide.

The age range of 0–25 years used for this review aligns with Children and Families Act 2014 and the SEND Code of Practice which provides statutory guidance on duties, policies and procedures relating to Part 3 of the Children and Families Act 2014 and associated Regulations.

Parent carers of disabled children and young people

The Practice Guide focuses on parenting support for parent carers of disabled children and young people, and those with special educational needs, aged up to 25 years old. In the Practice Guide, it is this particular group of parents that we are referencing, and not all parents.

‘Parent carers’ has been used in the Practice Guide as it is the term preferred by most parents of disabled children and young people, and encapsulates the range of caregiving roles, including birth parents, single parents, same sex or male/female couples, kinship carers, foster carers, and adoptive parents.

Parenting support

In the Practice Guide, we use the World Health Organisation’s definition of ‘parenting interventions’:

“A structured set of activities or services, with established eligibility requirements, aimed at enhancing how parents’ and caregivers’ approach and fulfil their roles, specifically in terms of parenting knowledge, attitudes, skills, behaviours, and practices.” (World Health Organization, 2022).

We have intentionally adopted the language of ‘parenting support’ to refer to ‘parenting interventions’. We use ‘parenting support’ to broadly refer to parenting interventions, programmes, and services that support parent carers of disabled children and young people with their parenting, including parenting practices and the parent–child relationship.  These parenting programmes are designed to be preventive or support oriented, enabling parent carers and other caregivers to modify their parenting knowledge, skills, attitudes, or behaviour. 

When we refer to ‘parenting support’ within this Guide, we are not referring to the broader types of support offered locally that parent carers of disabled children and young people may be offered (including short breaks), although we recognise that these are often essential aspects of the wider support package. 

The types of parenting support recommended in the Practice Guide are delivered to parent carers through various support activities, either in group settings or individual parent/family-based sessions, with or without the involvement of children. The programmes are delivered by practitioners in settings such as the home, a community centre, or online.

This Guide does not cover interventions for supporting parent carers of children and young people with severe mental illness, as our evidence review did not find any evidence of proven programmes that improve outcomes for these parent carers or children and young people, identifying a clear evidence gap. However, we found limited qualitative evidence showing the usefulness of parenting programmes for supporting parent carers of young people with severe mental illness, particularly those with psychosis and bipolar disorder. This evidence has been included in the Key principles section of the Guide to demonstrate how programmes should be designed and delivered to these groups of parent carers and young people.