Parent carers – the key to prevention and early intervention in SEND

Parent carers want what is best for their children. They are their biggest advocates, invested in their day-to-day health and happiness, and committed to ensuring they have the very best future ahead of them. This is just as true for the parent carers of children with special educational needs and disabilities (SEND), but in some areas, strained relationships between parent carers and SEND services leave parent carers feeling like their child is “just a number.”

Over the last 18 months, we have surveyed parent carers in 15 local areas and the words “fight” and “battle” appeared countless times. Complex systems and processes – even those designed with the best intentions – can leave families in the dark. Families report that their children’s needs could have been prevented from escalating if they had been identified and met earlier. Many report frustration and anger because they were not treated as equal partners.

By the time they reach statutory education, health and care processes, and engage with SEND teams, parent carers can feel like they have exhausted all options. Yet, staff in the SEND systems we have worked with have been clear about their ambitions to better engage parent carers – from working with individual children and their families to whole system redesign and improvement.

How can we improve this? At IMPOWER, when we partner with a local area on SEND improvement, we work alongside parent carers to understand what they want to change in their local SEND system and help that area realise that vision. Key components to working together as equal partners include:

• Acting early and understanding that parent carers are the key to prevention and early intervention. Many families and professionals report that more could be done to meet children’s needs earlier. Yet, parent carers report being kept at arm’s length until the very last moment. Engaging families early and drawing on their expertise about their children will, not only prevent children’s needs from escalating unnecessarily, but also help fix communication challenges.
• Engaging families in system change that goes beyond their own experiences. Understanding real lived experience is the best way to understand the health of any SEND system but many parent carers will also have great ideas about service improvement across the wider SEND system. Parent carers could be a fantastic source of energy and innovation. Many local areas are not yet making the most of their contributions.
• Ensuring the right people are involved. No local SEND system can set a truly inclusive ambition for transformation without the presence of parent carers. Parent carer representatives should not only help to set the ambition, but they should be involved in overseeing its delivery and realising its potential. When developing these new ways of working, it is important to ensure that a range of parent carers feel comfortable and able to engage. This broadens the net on current ways of working and increases inclusivity.
• Getting started as soon as possible. Mutual trust and collaboration have been lost in many systems and will take time to rebuild but we must start now. All local areas should invest in rebuilding these relationships and accept that there will be bumps along the road but begin their journey of collaboration as soon as they can.

Whenever we work with a local SEND system, we adhere to these principles and help embed them into their day-to-day activity.

Last year, we developed Building lived experience and co-production into High Needs: a toolkit, itself co-produced with local and national leaders across councils, education and health, working alongside parent carers and IMPOWER’s High Needs Delivery Advisory Board. This toolkit provides practical support to local SEND systems on their co-production journey. It helps them understand where they are now and plan for the future.

To find out more about how we have supported our clients and their local SEND systems, read our  High Hopes for High Needs Impact Report.