Access to health care for people with intellectual disability in Belgium: challenges and solutions

Abstract

Abstract Background people with intellectual disability (PWID), such as those living with Down syndrome, experience poorer health outcomes, are more at-risk of comorbidities and have a lower life expectancy than the general population. Moreover, they are more likely to experience discrimination and refusal of care than other citizens. To support the implementation of the rights of PWID as promoted by the United Nations Convention on the Rights of Persons with Disabilities, the Belgian Health Care Knowledge Centre measured the health disparities between PWID and without ID in Belgium, collected the barriers faced by PWID and suggested solutions. Methods a mixed method study was conducted in 2020-2022. Quantitative data were obtained from linking the social security data related to PWID to the health expenditures data. A representative population sample was obtained to allow for compare PWID with the general population. Experiences and needs of PWID and of professionals were collected through semi-directive interviews and nominal groups. Stakeholders from handicap and health sectors joined an online survey to gather possible options for solutions. Results data of 17 155 PWID were analysed and compared to a sample of the Belgian population. PWID have, i.e., a lower access to dental care (49.8% for PWID vs 65.8% in 2019) or breast cancer screening (42.6% for PWID vs 59.7%). We found no difference for contact with a GP and diabetes follow-up. Five categories of barriers emerged: stereotypes and prejudices; lack of knowledge and competences; poor communication; organisational gaps; lack of sociopolitical support. We identified 25 actions, aiming at 8 objectives, with 3 preliminary conditions: more time, universal design and reasonable adjustment. Conclusions focusing on universal design, that is tailoring health services to the needs of the most vulnerable patients that are PWID, can increase access to health care to all patients and not only the PWID. Key messages • People with intellectual disability lack of access to preventive health care. • Focusing on universal design increases access to health care for all.