How do we ensure patient safety for people with severe intellectual disabilities – a group with high levels of support needs, low visibility, and few strong advocates?
This report from the Norwegian Healthcare Investigation Board (Ukom) is based on the story of a young man with severe intellectual disability and complex health challenges, who died suddenly in hospital. In the report, we have chosen to call him Andreas. Through his story, and a parallel case from another family, the report highlights system failures and areas where the healthcare and care services can be improved.
The report shows that people with severe intellectual disabilities often have needs similar to those of children, but agewise are treated as adults in a system that is not always adapted to their cognitive and communication abilities. They depend on safety, predictability, and continuity – and on people who know them well. When these needs are not acknowledged, it can have serious consequences for their health and quality of life.
Three Key Findings:
- Lack of professional competence and service adaptation:
There are large differences in the knowledge and skills of staff, and many lack relevant training. This weakens the ability to provide individually tailored and evidence-based healthcare and support. - Fragile collaboration with families:
Parents who provide lifelong care have unique insight in their childs needs and functionality, but are often labeled as "difficult" when interacting with health services . Without systematic cooperation with families, services risk losing valuable knowledge and support. - A strained safety net:
The public complaint and supervision system is supposed to serve as a safety net. Complaint processes are time-consuming and complex, and long case-handling times may lead to delayed or missing services. This weakens both patient safety and trust in the system.
Ukom makes five recommendations to the Ministry of Health and Care Services to improve patient safety for people with severe intellectual disabilities:
- Clearer directions for having a support person present during hospital stays
- Improved education in intellectual disability and family collaboration in health-related study programs
- Consider introducing a vocational education path for social educators at upper secondary level
- Use of liaison services from habilitation departments in specialist healthcare
- Consider the need for a dedicated supervision scheme for services provided to people with intellectual disabilities who live in shared housing
In addition, we highlight specific learning points directly aimed at the service level.
The report can lead to inspiration and new thinking when it comes to develope and strenghten services that see, understand, and protect people with severe intellectual disabilities.
The translation from Norwegian to English is based on AI. Ukom has reviewed, edited and quality assured the translation.