Beyond the Easy Read - Supporting people with Intellectual Disabilities to be partners in their healthcare journey

Short introduction/background summary: People with intellectual disability are often not given opportunity to learn about their health, preventative health practices or participate in their health care and related decision-making, despite person-centred care being a key component of integrated care. Why we are conducting a workshop: It is well recognised that effective health care requires a partnership with the patient. However, for many patients who have an intellectual disability, there can be barriers to their involvement which are not of their making. These barriers may include not being given the opportunity to access health education, develop critical health literacy skills, such as communicating about their health or participating in supported decision-making. Barriers also include the lack of appropriate accommodations, such as accessible information, or support for decision-making, as well as health professionals prioritising the voice of others such as family and support workers above that of the person with intellectual disability. This workshop will provide an opportunity to explore best practice examples of support for people with intellectual disabilities with their health journey in community and hospital settings. The workshop will also discover the key priorities from people with lived experience, caregivers, health professionals and system managers regarding supporting people with intellectual disability to receive optimal health care in a person-centred manner. Recommendations for action in terms of resource development and implementation will be produced. Who it is for? This workshop is for people with intellectual disability, caregivers, advocates, health professionals, system managers, and researchers. What we are going to do? The workshop will use a combination of presentations and world café discussions to exchange knowledge and explore experiences in supporting people with intellectual disability. The proposed schedule is as follows: 5’: Welcome, setting the scene and introduction of core concepts 10’: Making information accessible – lessons learned from developing a health curriculum for people with intellectual disability – health curriculum (Mary-Ann & Laura) 10’: OUR role in supporting the person with intellectual disability to participate - upskilling caregivers and health professionals (Rachel) 20’: World café Round 1 – Example questions for each table: How do we make information more accessible for people with low literacy? What best practice examples have you used (beyond the easy read)? What would be helpful for you in your role? 5’: Round 1 reporting to plenary 20’: World café Round 2 – Example questions for each table: What is your approach for effective two-way communication with people with intellectual disability? How do you support people with intellectual disability to participate in shared decision-making? What tools have been helpful? 5’: Round 2 reporting to plenary 10’: Discussion of key messages, recommendations for future research/practice, and useful tools 5’: Summary and concluding remarks. Engagement with the audience: The World café approach will allow participants to engage with and learn from each other’s experiences in supporting people with intellectual disability. Take home messages: Recommendations will be formulated at the end of the workshop and provided to participants.