Applied Evidence

Transitioning patients with developmental disabilities to adult care

Author and Disclosure Information

The pre-visit questionnaire, instructive videos, and Web resources detailed here can help you play a pivotal role in planning, commencing, and solidifying this transition.


› Provide young people who have an intellectual or other developmental disability (IDD) with a defined, explicit process for making the transition into the adult health care system. A

› Conduct an annual comprehensive, systematic health assessment for patients who have IDD to improve detection of serious conditions and sensory impairments. A

› Encourage young people and adults with IDD to participate in regular physical activity to reduce psychosocial stressors and counteract metabolic syndromes. A

Strength of recommendation (SOR)

A Good-quality patient-oriented evidence
B Inconsistent or limited-quality patient-oriented evidence
C Consensus, usual practice, opinion, disease-oriented evidence, case series



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.

Developmental disability patient

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:

  • preparation
  • 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 ( 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...


Recommended Reading

Pandemic upped telemedicine use 100-fold in type 2 diabetes
Type 2 Diabetes ICYMI
New drug, finerenone, approved for slowing kidney disease in diabetes
Type 2 Diabetes ICYMI
South Asian ancestry associated with twice the risk of heart disease
Type 2 Diabetes ICYMI
Not so crazy: Pancreas transplants in type 2 diabetes rising
Type 2 Diabetes ICYMI
Rising rates of T1D in children: Is COVID to blame?
Type 2 Diabetes ICYMI
New agents for youth-onset type 2 diabetes ‘finally in sight’
Type 2 Diabetes ICYMI
Metformin use may curb BCC risk
Type 2 Diabetes ICYMI
ADA/EASD draft guidance aims to bring adults with type 1 diabetes out of shadows
Type 2 Diabetes ICYMI
Statin safety, low muscle pain risk upheld in ‘reassuring’ study
Type 2 Diabetes ICYMI
Cycling linked to longer life in people with type 2 diabetes
Type 2 Diabetes ICYMI