What is parent carer participation?

Parent carers can often pinpoint problems frequently experienced by families with disabled children. This knowledge is useful to professionals as they plan services to meet disabled children’s needs.

Parent carer participation is when parents and professionals work together, recognising each other’s expert knowledge, to design, develop and improve services for disabled children in the local area.

What is a parent carer forum?

The way parent carers work with professionals is by forming groups called parent carer forums.

A parent carer forum is a group of parents and carers of disabled children. Their aim is to make sure the services in their area meet the needs of disabled children and their families.

They do this by gathering the views of local families and then working in partnership with local authorities, education settings, health providers and other providers to highlight where local services, processes and commissioners are working well, or challenge when changes or improvements need to be made.

In England there are parent carer forums in almost all local authority areas. See public contact details for the parent carer forums in England.

Forums usually have a steering group of parents who lead this work and listen to the views of other parents in the local area to make sure they know what is important to them. Forums are keen to hear from as many parent carers as possible.

Who can join a parent carer forum?

Parents or carers of a child with any type of additional need or disability are welcome to join. Joining your forum does not mean you have to commit lots of time. In most forums you can join and receive information, and then decide if you want to get more involved at your own pace.

Read parent participation stories, where parents explain why they got involved and what it involved.

The forum represents the views of parents in the local area but does not advocate for individual families.

Co-production

Co-production is an important principle in parent carer participation.
Co-production is when parent carer forums play an integral and equal part in the decision-making process and are fully engaged in shaping, developing, implementing and evaluating services and systems.

Evidence shows that these partnerships often make the best use of people’s time and money, whilst also improving outcomes for disabled children.

Watch this co-production video or watch the subtitled version, where forums, local authorities, health providers and commissioners share their experiences of working in co-production and how it helped them improve services.

Co-production and campaigning
The conditions of their grant mean that parent carer forums can’t take part in campaign activity. However, that doesn’t mean that forums can’t support local and national campaigns with their knowledge and experience.

Funding for parent carer participation in England

There is a grant available for a parent carer forum in every local authority area in England from the Department for Education (DfE) to support their development and strategic involvement in local services. The grant is administered by Contact.

National Network of Parent Carer Forums (NNPCF)

The National Network of Parent Carer Forums (NNPCF) is made up of all of the parent carer forums from across England. The NNPCF ensures that local parent carer forums are aware of national developments. It promotes opportunities for the voice of parent carers to influence at a national level.

The NNPCF works closely with the Department for Education, the Department of Health, and other partner organisations to improve outcomes for children and young people with disabilities or additional needs and their families.

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june, 2021

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