People with an intellectual disability are living longer, but continue to experience significant health disparities, with the average age of death 19 years younger than for the general population1. Health problems often go unrecognised and unmet, as people with an intellectual disability are largely excluded from health screenings and targeted health promotions2, 3. They are often absent from the decisions that affect them the most, including financial and retirement planning, choice of residence and desired levels of care4. Decisions and policies about health and care are often made as a result of research findings, so it is important that people with ID are involved in research so their voices are heard. This project develops a toolkit for people with ID and their carers to support and promote their involvement in research. The toolkit, based on the learnings from the IDS-TILDA study, will be co-created by researchers and people with ID and offer ‘how to’ guidance on how individuals with ID can be involved as partners in research.
