The influence of genetic factors on education health and care plan obtainment for pupils with intellectual developmental disabilities

Abstract The study aimed to investigate the hypothesis that the Education, Health and Care Plan (EHCP) obtainment for pupils with intellectual developmental disabilities (IDD) of genetic aetiology was influenced by genetic factors and their family’s socioeconomic status. We recruited 2738 participants with IDD of genetic aetiology aged between 6–28 years old (mean age 14 years, 56% male). The data used included genetic inheritance information, primary special educational needs type, the age when the EHCP was granted, parental education level, free school meal eligibility and a family index of multiple deprivation score. Only 78% of participants were eventually granted EHCPs. Those with an inherited variant waited significantly longer and were less likely to receive an EHCP than those with a de novo variant. They were significantly more likely to be living in more deprived areas, and their parents had attained lower levels of education compared with those whose IDD was caused by an equivalent de novo genetic anomaly. This unique cohort study demonstrated that the obtainment of an EHCP in families seeking additional educational support for children with IDD of genetic origin is inequitable and is influenced by social and genetic factors.