Visiting a hospital or clinic can be a stressful or frightening experience for some individuals with Down syndrome. The stress and fear can be increased if the healthcare providers are unfamiliar with the individual and their health history and/or a family member or caregiver is unable to be present.*
Several forms have been developed by a variety of organizations to help in these situations. The forms prompt individuals with Down syndrome and their families to share information about the individual's health history, medications, communication preferences, and other needs. They are encouraged to fill out these forms and bring them to hospital or clinic visits so that the healthcare providers know how to best support the individual receiving medical care. We have provided links to two examples below.
- My Health Passport: This document was developed by the University of South Florida and Florida Center for Inclusive Communities.
- COVID-19 Forms: This link takes you to Stony Brook University's website. In response to COVID-19, Drs. Ballan and Perri developed a COVID-19 Disability Form with different versions for each state in the United States. The versions account for differences in states' Developmental Disabilities Services agencies and advance directive processes.
* Federal law requires that hospital visitor policies allow people with disabilities to have access to support from a family member or caregiver if needed while in the hospital. Additional information can be found in this resource.
Additional resources on health for individuals with Down syndrome and their families can be found at this link.