Knowledge about the living conditions for people with intellectual disability (ID) is limited, not least since they constitute such a small group, which puts them at risk of being invisible in the general statistics. Thus, there is a great need of a complete register of individuals in this group.
The Swedish Halmstad University Register on Pupils with Intellectual Disability (HURPID) is the first population-based, nationwide sample of former pupils in upper secondary school for pupils with intellectual disability (n = 26 906). The aim of this presentation is to provide a description of that register.
HURPID consists of pupils who were assessed as not having the ability to reach the knowledge requirements of upper secondary school, due to ID, during the academic years of 2000/2001 – 2019/2020. The cohort was established to study the transition from school to working age and to follow the development regarding living conditions, occupational patterns, and health over time.
School leaving certificates and corresponding documents of former pupils who attended the school form in question during the academic years of 2000/2001 - 2010/2011 were collected in 2011-2012. Information on national identification number, sex, program, municipality, graduation year and complete/incomplete degree were registered. In 2020-2022, a similar data collection was carried out and corresponding information for the academic years of 2011/2012 - 2019/2020 was added (total n = 11 077 women and 15 829 men).
So far, HURPID has been used to study occupational patterns in general (also including exploration of those not involved in employment, education, or daily activity), comorbidity, mortality, heritability, substance abuse, crime, and victimization. Future studies may, for example, examine occupational patterns over time, changes after reforms, need of support, financial situation, access to health care, comparisons with individuals with low intellectual ability (without ID), risk factors for ID and penal sanctions.
2023.
Nordic Network on Disability Research (NNDR) 16th Research Conference, Reykjavík, Iceland, May 10-12, 2023