Other national sources of information 

CDC is part of the National Children’s Bureau family. It’s the umbrella body for the disabled children’s sector. It has a membership of over 300 voluntary and community organisations. It has an active network of practitioners that spans education, health and social care. Find out more about what CDC do and their areas of work on the CDC website.  

CDC also host Friendship, Learning, Achieve, Reach and Empower (FLARE), the DfE’s national young SEND advisory group. CDC also offers young people’s conferences, workshops and events for practitioners in local areas to support the development of good quality information and resources.  

For more than 50 years, KIDS has provided a wide range of services nationally for disabled children, young people, and their families. KIDS support local areas to improve CYP participation via the Making Participation Work programme. Along with CDC, their focus is on local participation groups and the Collective, a national group of young people.  

Having well-informed young people who can share their lived experiences of a local area’s pathways and services gives a meaningful refection on current provision. Areas that have a young people’s group who support with consultation and decision-making, have an impact on service development and delivery, and are empowered to be heard, see more meaningful coproduction work.   

Kids directly facilitate three local area participation groups. But they support a wider cohort of young people with SEND through the Collective. Local participation groups can join the Collective and make use of the training and resources Kids offer through the new young people’s HUB.

The Collective brings together young people aged 13-25 years with a special educational need and/or disability and participation groups. We recognise that voices are stronger when united! They support young people to be heard by decision makers and those in power. It is a national example of a hub and spoke model of participation. The core groups help support development as well as taking part, before the work goes out to wider groups. This is proving a successful model in local areas as well.     

The Collective offers young people from local area groups opportunity to feed into national initiatives, development and the future of strategic SEND systems.  This is a growing movement. But it is important to reflect that the statutory requirement of having a parent carer forum in every locality is not mirrored for young people with SEND. Your area may not yet have a group.   

Working with parent carer forums

Young people were asked about how they could work better together with parent and carer forums at a recent Collective Get Together. The same was asked of forums. A key highlight was knowing about each other, shared priorities and initial connections being made, then following up by championing each other to be present. You can find a short video about this work at: Young people and parent carer forum synergies.

Co-production is important to young people, they see the value of working with others, services, practitioners, and parents and carers. Young people bring a different view to discussions but are often not offered a ‘seat at the table’. The Collective have created an info-gram about what co-production means to them and called it ‘The Fundamentals of Co-production’. It is shared as appendix for your reference.   

As part of the Children and Families Act 2014 (section 32) it is a legal requirement that all local authorities ensure children and young people with special educational needs and disabilities (SEND) and their parents have access to impartial information, advice, and support. This includes through a dedicated Information, Advice, and Support (IAS) service. That service must provide free, confidential, and impartial information advice and support to children and young people aged 0 – 25, and their families, on matters relating to SEND. 

SENDIAS services provide information, advice, and support through a dedicated helpline, website, resources, and email, as well as face to face by appointment. They operate all year round, Monday to Friday. If you are unable to get through to them, there will be an answerphone service. You can leave a message, and someone will be in contact. SENDIASs also provide information through signposting, and by delivering training.  

SENDIASs are impartial services. They have access to a large amount of legal training on SEND law across education, health, and social care. Their role is to give legally based advice only. They do not take sides in any disagreement between professionals and children, young people or parents.  

A set of minimum standards underpins all SENDIAS services. These DfE-endorsed standards are based upon the requirements on services as set out in the Children and Families Act, SEND Code of Practice and in the SEND regulations. These standards set out how services should be commissioned, managed, and governed, as well as their strategic functions, operational functions, and professional development.   

Co-production is vital to ensure SENDIASs meet their best practice and statutory responsibilities. This includes children, young people, and parents being part of the commissioning and design of the SENDIASs. Through the SENDIASs steering group that must include children, young people, and parents. SENDIASs must be set up to reach and be able to work directly with children, young people, and parents as well as practitioners. And this can only be achieved through co-production.

The steering group should be the method that those involved in SENDIASs, including children, young people, parents and SEND practitioners from the LA and Health teams, can support the SENDIASs to achieve its aims, and to challenge the SENDIASs on best practice, including the minimum standards. 

SENDIASs are self-referral services. It is a requirement that they, and their Local Authority, make themselves known to all in their local area. They’ll do this through a variety of methods including through local schools and colleges, social media, the local offer and their website. Other professionals or services cannot make referrals to SENDIASs as this would impact the confidentiality of the service.  

SENDIASs are statutory services. This means the local authority has to fund them. The local authority is ultimately responsible for making sure they are meeting the Local Authority’s legal requirements to ensure children, young people and parents have access to impartial IAS. One of the requirements of a SENDIA, which both the service and the local authority legally must adhere to, is that the service is run at arm’s length from the local authority. This means that although there must be good communication between a SENDIASs and their LA, that the SENDIASs must remain impartial. The two should not share confidential information between them.  

SENDIASs are confidential services. This means that a child, young person, or parent should be able to access their SENDIASs with the confidence that they will share no details to anyone outside of the service. There is of course a duty to share in the case of safeguarding concerns.   

SENDIASs services range hugely. However, all services have the same responsibilities as set out in chapter two of the code of practice.  

The Department for Education (DfE) provides information on SEND issues. This includes the local area SEND inspections, including outcome letters and information about the 2023 new inspection framework.  

The DfE publish information on expectations on Local Authorities, early years settings, schools and post 16 provision. 

The DfE publish consultations, which the forums may want to respond to. It is worth checking the Consultation hub periodically.