On Friday, SEND Views & Voices Worcester welcomed Adam Johnson, Worcestershire County Council’s Director of Children’s Services, to a sell-out event attended by parent carers from across the county. Families came together to share their lived experiences of navigating Worcestershire’s SEND system.
Adam outlined his areas of responsibility and shared his professional journey to becoming the Council’s newest Director of Children’s Services. Parent carers then responded by sharing their families’ stories – detailing the realities of supporting children and young people with special educational needs and disabilities (SEND).
The experiences shared spanned the full breadth of local SEND services, including education, health, and children’s social care. Key concerns raised included:
- Mediation processes where Worcestershire County Council failed to send representatives with sufficient delegated authority, adequate preparation, or the time needed to meaningfully engage.
- Prejudice among education, health, and social care professionals towards private diagnoses, alongside associated accusations of Fabricated or Induced Illness (FII).
- The clear correlation between exclusions from mainstream education and undiagnosed or uninvestigated SEND.
- Schools’ lack of knowledge about referring children who are unable to attend school to the WCC Children Who Cannot Attend School (CCAS) panel.
- Ongoing difficulties in securing suitable full-time education for children unable to attend school due to health needs (Section 19).
- The near-impossibility of securing an appropriate Education Otherwise Than At School (EOTAS) package, even where EOTAS has been agreed.
- The disconnect between Local Area Partnership activity and meaningful improvements in outcomes for children and young people.
Despite many attendees not knowing one another, the commonalities in their experiences were striking. Families described children who were undiagnosed neurodivergent, experiencing high levels of anxiety, poor mental health, and an inability to attend school. Parents spoke of seeking diagnosis and support, only to be failed by the NHS, rejected by CAMHS, and subsequently subjected to scrutiny or blame by children’s social care.
Parent carers’ experiences ranged from casual parental blame to formal child protection accusations. Many families described feeling “turned on” by the very services they had approached for help.
These Worcestershire families’ experiences closely mirror the findings of the national Blamed Instead of Helped project, led by West Midlands ADASS in collaboration with the University of Birmingham. The research identified eight key findings:
- Autism is widely misunderstood by professionals, who often fail to recognise its diversity and complexity and rely on outdated stereotypes.
- Accusations of parental blame cause trauma, long-term harm, and increase the risk of suicide.
- Autistic parents may face heightened risk of blame and discrimination, as autistic communication styles and presentations are frequently misunderstood.
- Parents of autistic children commonly experience deep mistrust in services and professionals.
- Families may face an increased risk of child protection proceedings, with parents frequently accused of neglect or harm.
- Parental knowledge is routinely dismissed or undervalued, with parents’ motives questioned.
- Parental blame is more likely before a child receives an autism diagnosis.
- Current support for parents is often ineffective and, in some cases, reported as doing more harm than good.
The strength and consistency of the testimonies shared on Friday underline the urgent need for systemic change – and for families to be listened to, believed, and supported rather than blamed.
