Some adults who have an intellectual or other developmental disability (IDD) require extensive subspecialty care; many, however, depend primarily on their family physician for the bulk of their health care. With that reliance in mind, this article provides (1) an overview of important services that family physicians can provide for their adult patients with IDD and (2) pragmatic clinical suggestions for tailoring that care. Note: We highlight only some high-impact areas of clinical focus; refer to the 2018 Canadian consensus guidelines for a comprehensive approach to optimizing primary care for this population.1
Laura S, a 24-year-old woman with Down syndrome, is visiting your clinic with her mother to establish care. Ms. S has several medical comorbidities, including type 2 diabetes, hyperlipidemia, repaired congenital heart disease, schizoaffective disorder, and hypothyroidism. She is under the care of multiple specialists, including a cardiologist and an endocrinologist. Her medications include the atypical antipsychotic risperidone, which was prescribed for her through the services of a community mental health center.
Ms. S is due for multiple preventive health screenings. She indicates that she feels nervous today talking about these screenings with a new physician.
First step in care: Proficiency in the lexicon of IDD
Three core concepts of IDD are impairment, disability, and handicap. According to the World Health Organization2:
- impairment “is any loss or abnormality of psychological, physiological, or anatomical structure or function.”
- disability “is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.”
- handicap therefore “represents socialization of an impairment or disability, and as such it reflects the consequences for the individual—cultural, social, economic, and environmental—that stem from the presence of impairment and disability.”
Essential transition: Pediatric to adult health care
Health care transition (HCT) is the planned process of transferring care from a pediatric to an adult-based health care setting,3 comprising 3 phases:
- transfer from pediatric to adult care
- integration into adult-based care.
Two critical components of a smooth HCT include initiating the transition early in adolescence and providing transition-support resources, which are often lacking, even in large, integrated health systems.4 Got Transition, created by the National Alliance to Advance Adolescent Health, outlines core elements of an organized HCT process (www.gottransition.org) specific to young adults with IDD, including young adults with autism spectrum disorder.5,6
Even young people who are served by a family physician and who intend to remain in that family practice as they age into adulthood require HCT services that include6:
- assessment of readiness to transition to adult care
- update of the medical history
- assessment and promotion of self-care skills
- consent discussions and optimized participation in decision-making
- transition of specialty care from pediatric to adult specialists.
Continue to: For an ideal HCT...