What is parent carer participation?

Parent carer participation sees parents and professionals working together to improve services for disabled children.

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What is parent carer participation?

Parent carer participation is when parents and service providers work together, recognising each other’s expert knowledge, to design, develop and improve services for children and young people with SEND aged 0 – 25 in the local area.

Parent carers can help to pinpoint problems families with children and young people with special educational needs and disabilities (SEND) frequently experience. This knowledge is useful to service providers as they plan services to meet the needs of these families.

What is a parent carer forum?

The way parent carers work with service providers is by joining parent carer forums.

A parent carer forum is a group of parents and carers of children and young people aged 0 – 25 with SEND. They gather the views of local families, from all communities, so that they are representative of their local population. They work in partnership with local authorities, education settings, health and social care providers, and other local organisations to highlight where local services, processes, and commissioners are working well, and to provide challenge when changes or improvements need to be made.

Forums are usually led by a parent steering group or committee. 

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

“The difference about parent carer forums is the fact that we’re experience-led organisations. We’re all parent carers ourselves. We are embedded in the community, and we have an ongoing conversation with that community on a day- to-day basis. It isn’t just a one-off survey or anything. We are constantly talking to other parent carers and we are hearing everything across the whole experience, and that’s a really unique element of parent carer forums and a really valuable one.” 

Sarah Thomas, Shropshire Parent and Carer Council Influence and Change Lead

Find out more

You can learn more by watching our video ‘What is a parent carer forum and what they do?

Watch parent carer Paul from SENDS 4 Dad talk to Nausheen and Jacqui from Swindon SEND Families Voice about the role of a parent carer forum and why they got involved.

Our webinar Introduction to participation, recorded by Contact associate Sharon Smith and Grainne Saunders from West Sussex Parent Carer Forum offers a good introduction to the topic.

Here are some examples of parent carer forum’s videos. Here is a video from Greenwich PCF which aims to tell parents in their local area what they do. Lewisham Parent & Carers Forum have also produced a  video to encourage other parent carers to join their forum.

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.

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

You can learn more by watching our video Making a Difference – Why should I join my Parent Carer Forum? 

Co-production

An important principle in parent carer participation is co-production.

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.

You can read more about co-production in our Parent Carer Forum Handbook [PDF]

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.

Find out more about how parent carer forums can work with campaign groups in our co-production and campaigning guidelines

National Alliance for Partnership Working (NAPW)

Contact hosted the National Alliance for Partnership Working (NAPW) which included key organisations involved with special educational needs and disability. The alliance developed a shared language and understanding of co-production. Using the Quality Indicators of Co-production framework [.doc] should help to develop a shared level of understanding and expectation to which all local area partners can aspire.

The NAPW definition of co-production is:

Co-production is an equal and reciprocal relationship where everyone’s knowledge and skills are used to create better outcomes.

The NAPW adopted the model of co-production developed in Rotherham. It includes four principles known as cornerstones. The Cornerstones required to create good quality co-production and inclusive practice are:

Developing and nurturing each of these principles builds:

The Four Cornerstones have been developed into a quality indicator framework that enables local areas to reflect on how well they are co-producing and help embed co-production across organisational culture.

Quality Indicators of Co-production – a framework and self-evaluation tool

Using the Quality Indicators of Co-production framework [.doc] should help develop a shared level of understanding and expectation to which all local area partners can aspire.

For more information or support to improve and develop co-production, please contact one of the named parent carer participation advisers, via the how we support forums page.

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.

Find out more about the grants process

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.