‘Systems Generated Trauma is the harm caused by the policies and practices of the public services that disabled children and their families are forced to navigate. While often unintentional, this harm stems from deep-rooted problems that turn the act of seeking help into an ordeal.’ – Cerebra Report
Parent Carers and SEND Family Carers have for some time reported that engaging with the SEND system has had a negative impact on their wellbeing. The negative impact of trying to navigate a complex and disorganised system, where finances too frequently take priority over legal duties or wellbeing and families feeling they have to constantly fight for the help they need, has been becoming increasingly obvious. The new report from Cerebra highlights the extent to which this is happening and the damage it is causing.
The Report Summary states;
‘Systems Generated Trauma’ is the harm caused by the policies and practices of public services. Our work with families has identified several problems within the systems that are meant to support them:
- Different parts of the system work separately and don’t communicate with each other.
- The system is incredibly difficult for families to navigate.
- Parents often feel blamed for the challenges they face.
- The system doesn’t listen to parents or value their expertise as parent carers.
- Families aren’t kept informed and decisions aren’t explained.
- The system focuses on saving money rather than supporting families.’
These are issues that Shropshire Parent Carers and SEND Family Carers often raise with PACC. Recently PACC presented a summary of engagement activity and feedback to the Shropshire SEND and AP Partnership Board which shared these concerns with senior managers of the Shropshire SEND system. You can read this summary here
PACC has repeatedly highlighted concerns about poor Parent Carer/SEND Family Carer mental health, which is being impacted not just by the local situation but the current difficult national conversation about SEND which is often distressing listening for families. We are aware that there is a long-standing issue with the delivery of Parent Carer Needs Assessments in Shropshire, but perhaps of more concern is the lack of clarity about what these assessments when carried out, can actually deliver and how effectively they support Parent Carer wellbeing.
PACC is working to improve Shropshire Parent Carers and SEND Family Carers experience of support and engagement in the SEND System in a number of ways;
- Ensuring that Senior Leaders across the local SEND system understand and recognise System Generated Trauma and the significant impact it has on Parent Carers and SEND Family Carers wellbeing and the need to actively address this as a priority.
- Using PACC’s position as the nationally commissioned Parent Carer Forum for Shropshire, to influence and promote decision making and changes that positively address the issues that are identified as contributing to System Generated Trauma. For example, PACC representatives work across the whole system (SEND specific services and the wider support services) promoting the need for a joined up and holistic ways of working. PACC actively promotes the value of the Parent Carer / SEND Family Carer voice having a key role in all decision making that impact the lives of SEND families and challenges where this is not the happening.
- As an organisation PACC actively promotes the need for anyone who works in the SEND and wider support system to have an understanding of the lives and responsibilities of Parent Carers / SEND Family Carers and to consider the wellbeing of those who they interact with. This has been central to the work done by PACC with schools in the Partnership for Inclusion of Neurodiversity in Schools (PINS) project for example. PACC is also informing and contributing to the core training of a number of services used by Shropshire SEND Families, ensuring it includes training on ‘building positive and supportive relationships with Parent Carers and SEND Family Carers’.
- The development of PACC’s Community Support and Information provision work areas. This direct work with the Shropshire Parent Carers and SEND Family Carers is focused on addressing a number of the issues recognised as contributing to System Generated Trauma. For example;
- Supporting Parent Carers and SEND Family Carers to navigate the SEND System through our Community, all age Navigator offer. This offer provides personalised signposting on a 1:1 basis where Shropshire Parent Carers / SEND Family Carers can discuss their information needs with an experienced and trained PACC Navigator. This addresses some of the frustrations that SEND families face when trying to navigate the SEND system to find the information they need and offers support to understand how this information impacts their situation. This service also provides a listening and understanding ear, providing contact with a person who has a similar lived experience, and links Shropshire Parent Carers and SEND Family Carers to a wider network of support.
- The Buddies Social Network and Healthy Lives Holiday Programme provide opportunities for Parent Carers / SEND Family Carers to come together in the community and to access positive social experiences where their participation is valued. We are seeing this positively impacting the wellbeing of Parent Carer/SEND Family Carers.
It is clearly a difficult time for SEND families, too many young people are not receiving the help they need and are entitled to, and their families are worried about what the future will hold. Those in charge of the SEND system both locally and nationally must recognise the damage that is being done by a system that is meant to be offering support and opportunity but instead too often results in blame and crisis. We know that this situation causes difficulties and distress for both SEND families and those who work within the System. PACC believes that it has never been more important for us all to work together, in an honest, transparent and equal way to make the changes needed.
You can read the full Cerebra Report here