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Family involvement

Photo: We encourage family involvement every step of the way

There are many ways that as the parent or carer of a deaf child you can get more involved. By joining one (or all!) of the groups listed below you can find out more about supporting our work, influencing decision makers in your area to help deaf children, or can simply share your story and experiences. It is a fantastic opportunity to make a real difference.

Parent carer forum

A parent carer forum is a group who work with local authorities, education settings, health providers and other providers to make sure the services they plan and deliver meet the needs of disabled children and families. This includes deaf children.

Parent carer forums are often contacted to engage with and receive feedback from parents. This includes when there is an Ofsted and Care Quality Commission (CQC) inspection of support for children and young people with special educational needs and disabilities (SEND) or when a proposed change to a service where a consultation is being carried out.

When you join you start to receive information, and then decide if you want to get more involved. You commit as much time as you want to to the forum.

It's vital that parents and carers with deaf children get involved with the Parent Carer Forums, so that the needs of deaf children are represented in your local area. They are also a great way of finding out about local groups and activities for deaf and disabled children.

Visit The National Network of Parent Carer Forums (NNPCF) for more information.

Join Sound Out

The National Deaf Children’s Society’s network of parents and carers makes a powerful contribution, and allows us to make sure our services, policies, events, volunteering opportunities, publications and public profile reflect the actual needs of families affected by childhood deafness.  

Through joining Sound Out parents have become involved in shaping our information resources, developing our strategy, joining consultations, and feeding back about services in their area and nationally to make a difference. You can also share your story with us to help make a difference to other families with deaf children.

By joining Sound Out you can ensure the voice of families really helps shape what we do and your experiences inspire others. Every child and every family’s journey is unique, so whether your child has been recently identified as deaf, or whether you have lots of years of experience of being the parent of a deaf child, we’d like to hear from you.

Join Sound Out

Children’s Hearing Services working group

Do you want to use your experiences as a parent of a deaf child to have a direct impact on hearing services in your local area? If so, then joining a Children's Hearing Services Working Group (often referred to as CHSWG) is a great way to do that.

What are CHSWG's?

Children’s Hearing Services Working Groups (CHSWGs) are usually based in health authority areas, and bring together representatives from services supporting deaf children and their families to make sure that the different services are working well together and giving the best possible support.

Who will be at a meeting?

Each CHSWG usually includes representatives from health (like audiologists and paediatricians), newborn hearing screening programme staff, teachers of the deaf, speech and language therapists, social workers, local charities and regional directors from the National Deaf Children’s Society.

Why should I get involved?

CHSWGs operate across England, Scotland and Wales, and usually meet three or four times a year. Being a parent representative on a CHSWG means that you can use your first-hand experiences and unique overview of services to help shape the support for deaf children and their families in your area. It's really important that parents get involved so that services understand what the needs of deaf children and young people in their area are.

You can find out more about joining your local CHSWG by contacting our helpline, where they can link you with our Regional Director Team.

The National Deaf Children's Society also has Parents as Partners workshops that can support new and existing parent representatives to feel they are getting the most from their role, and to meet other parents. Contact our Freephone Helpline for information.

If you are already attending meetings and would like to link with other parent representatives via social media, then there is a dedicated Facebook page run by parents that you can ask to join.  

If you would like to find out more about any of the groups mentioned above, contact our Freephone Helpline on 0800 800 8880* or alternatively email us at helpline@ndcs.org.uk or talk to us via Live Chat.  

*This phone number is free from all landlines and major mobiles companies.