Stefan Kluibenschadl: Family say son was ‘let down by lack of services for autistic children’ This is a press release by Simpson Millar Solicitors, reposted by INQUEST 1 December 2022 Before Assistant Coroner Catherine WoodNorth East Kent Coroner’s Court30 November - 1 December 2022 Stefan was found dead in his bedroom earlier this year His parents’ say their concerns were ignored by health services and his school Family ‘passed from pillar to post desperately looking for help’ The parents of a Kent teenager with autism who was found dead in his bedroom earlier this year have said that their son was ‘let down’ by lack of services for autistic children, after an inquest into his death delivered a narrative verdict. Stefan Kluibenschadl, 15, was found ligatured at his home in Margate in March 2022, after his parents’ concerns were repeatedly ignored by health services and his school. At an inquest which concluded on 1 December 2022, the coroner determined that there was insufficient evidence of intention for a suicide conclusion. Speaking following the hearing Stefan’s family said they were ‘devasted’ at the loss of the life that they had all had together, saying that when their son had needed help, he was let down by lack of services for autistic children ‘by the very authorities who should have been there to support him’. They went on to say that Mental Health provision ‘has to change’ to stop children dying, with the family’s lawyer, Aimee Brackfield from Simpson Millar, adding that there appears to be a ‘lack of autism spectrum condition (ASC) appropriate support for young people in crisis’, and ‘little to no assistance for their families who find themselves passed from pillar to post desperately looking for help’. Further to the inquest the coroner is considering further evidence before she decides whether to make a a Prevention of Future Deaths report. Stefan was from Margate, Kent. A beloved son, his father described Stefan as an independent teenager who loved archery, clay pigeon shooting, fishing, and family get-togethers. Aged six, Stefan was diagnosed with “high functioning autism” and after a lengthy battle with the Kent local authority, his parents eventually managed to secure a statutory Education and Health Care Plan (ECHP). He was subsequently also diagnosed with severe dyslexia. Stefan attended Laleham Gap, a Special Educational Needs School in Kent. Stefan started to become disillusioned with school during the pandemic and the one-to-one support he was receiving was reduced to remote contact. In 2020, Stefan started working at a butchers on the weekends and during holidays. He loved this job as he felt he could just be himself and not be judged. However, towards the end of 2021, the inquest heard that Stefan told his parents and his school that some individuals at his work started bullying him after discovering he attended a Special Educational Needs School and that he had autism. This heavily impacted on his behaviour and mental health causing low mood and anxiety, as well as Stefan wanting to distance himself from his school so as not to be identified as autistic. Stefan felt he had no choice but to leave the job he once loved. Subsequently, his parents would drive him to school and he would hide in the back of the car as, due to the bullying, he did not want to be seen by others for fear of being identified as a Laleham gap student. In February 2022, his parents had a private counselling assessment which identified that Stefan scored highly for depression and low mood. They were only able to offer short term counselling which they declined to instigate as such counselling, was unable to meet Stefan’s needs. As a result of all of these issues, Stefan’s low mood worsened, and he was increasingly speaking to his parents about the difficulties he was facing and the hopelessness he felt. His parents turned to the GP but were warned that there was no specialist child and adolescent mental health services (CAMHS) provision or counselling in the local area for children with autism. The GP submitted an application for autism-specific counselling or CBT to a specialist provider (SCAAND) commissioned by NHS England, which was declined as he was not on the local CAMHS radar. A referral to CAMHS was never made and therefore no therapeutic intervention provided. On 20 March 2022, Stefan was found ligatured in his bedroom. He died in hospital six days later. The inquest heard a great deal of evidence about the route that Kent & Medway Integrated Care Board considered Stefan’s GP should have taken for a referral for mental health support, via their Single Point of Access (SPA). However, NELFT, who provide the service commissioned by Kent & Medway ICB accepted that their website did not signpost the proper route for autistic children needing help. As a result of Stefan’s father’s evidence, they took down that part of the website, which is now under review. Both Stefan’s GP and school said that when they had used the SPA for autistic children in the past they had not received the interventions and support they wanted. Stefan’s GP also gave evidence that the 2013 NICE guidelines, labelled “Autism spectrum disorder in under 19s: support and management” required a key worker support system for every single person under 19, and there was no such provision. The coroner has directed further evidence on this point before she decides whether to make a Prevention of Future Deaths report. The family has also submitted that the inquest evidence shows that in reality there is no appropriate therapeutic provision for autistic young people by NELFT. This is something that the coroner identified as a matter of concern in the Prevention of Future Deaths report in the case of Sammy Alban-Stanley, to which there has been no response (as far as the family is aware). Stefan’s family said: “Stefan was a beautiful boy in every way. He was kind, clever caring and funny and would always look out for other people. We as a family are devasted at the loss of the life we all had together and the life that he and we would have had. Stefan touched so many lives for the better and has left an indescribable hole in all our hearts and our lives. We miss him terribly. Stefan was bullied by those who are ignorant and who do not wish to understand or accept Neurodiversity. Then, when he needed help, he was let down by lack of services for autistic children by the very authorities who should have been there to support him and who fail vulnerable children and adults time and time again. Mental Health provision has to change to stop our children dying.” Jodie Anderson, Senior Caseworker at INQUEST, said: “Stefan and his family faced a Kafkaesque struggle to access services in the months leading up to his death. All doors remained closed to Stefan despite his particular vulnerabilities. It is well established that children with autism are at higher risk of suicide and still the resources and support available to mitigate against this are non-existent, both in Kent and nationally. Stefan’s death will be added to the long list of children who died trying to access support – their stories must be the wake up call that leads to proper change and investment in appropriate child-centred mental health support.” Aimee Brackfield of Simpson Millar Solicitors, who represent the family, said: “The evidence that came to light during Stefan’s inquest raises a number of serious concerns for his family about the level of support that is available to children with neurodiversity, who are also experiencing mental health issues. Fundamentally, there appears to be a lack of autism spectrum condition (ASC) appropriate support for young people in crisis, and little to no assistance for their families who find themselves passed from pillar to post desperately looking for help. This to-and-fro between services only served to compound the issues that Stefan was experiencing, and no doubt contributed to his struggles. It is the family’s hope that following the hearing and the coroner’s findings that more emphasis is placed on embedding specialist, dedicated mental health provision for young people with additional needs here in Kent, as well as in Trusts across the country. They are understandably desperate to ensure that no one should suffer as they have moving forward, and are looking to reassurances that lessons have been learnt, and that improvements to the level of care available are made.” ENDS NOTES For further information, please contact Lucy McKay on [email protected]. The family is represented by INQUEST Lawyers Group members Aimee Brackfield of Simpson Millar Solicitors and Maya Sikand KC. Other interested persons represented at the inquest are Kent County Council and Kent and Medway Integrated Care Board. Journalists should refer to the Samaritans Media Guidelines for reporting suicide and self-harm and guidance for reporting on inquests.