Caring for those in Need

Transitioning Young Adults with an Intellectual or other Developmental Disability to Adult HealthCare

Some teenagers and young adults who have an intellectual or other developmental disability (IDD) require extensive subspecialty care; many, however, depend primarily on their pediatrician or family physician for the bulk of healthcare. With that reliance in mind, this article provides (1) an overview of important services that primary care physicians can provide for their young adult patients with an IDD and (2) pragmatic clinical suggestions for tailoring that care.

BY Carl V. Tyler, Jr, MD, MSc and Molly McDermott, DO | October 2021 | Category: Employment & Transition

Transitioning Young Adults with an Intellectual or other Developmental Disability to Adult HealthCare

Essential transition: Pediatric to adult healthcare

Healthcare transition is the planned process of transferring care from a pediatric to an adult-based healthcare setting, comprising three phases:

  • preparation
  • transfer from pediatric to adult care
  • integration into adult-based care.

Two critical components of a smooth healthcare transition include initiating the transition early in adolescence and providing transition-support resources, which are often lacking, even in large, integrated health systems. Got Transition®, created by the National Alliance to Advance Adolescent Health, outlines core elements of an organized healthcare transition process ( specific to young adults with an IDD, including young adults with autism spectrum disorder.

Even youth served by a family physician and who intend to remain in that family practice as they age into adulthood require healthcare transition services, including:

  • assessing readiness to transition to adult care
  • updating the medical history
  • assessing and promoting self-care skills
  • discussing consent and optimizing participation in decision-making as adulthood approaches
  • transferring specialty care from pediatric to adult specialists.

For an ideal healthcare transition, full engagement of the patient, the medical home (physicians, nursing staff, and care coordinators) and the patient’s family (including the primary caregiver or guardian) are critical. In addition to preventive care visits and management of chronic disease, additional domains that require explicit attention in transitioning youth with an IDD include health insurance, transportation, employment, and postsecondary education.

Youth who have special healthcare needs and receive high-quality healthcare transition demonstrate improvements in adherence to care, disease-specific measures, quality of life, self-care skills, satisfaction with care, and healthcare utilization. 

Preparing for in-person visits

Pre-visit preparation, by telephone or a virtual visit, is often critical for a successful first face-to-face encounter. Pre-visit preparation should include identifying words or actions that can trigger anxiety or panic; recommending de-escalation techniques, such as specific calming words and actions; and detailing strategies for optimal communication, physical access, and physical examination. Initial appointments should focus on building trust and rapport with the healthcare team and desensitizing the patient to the clinical environment.  

The value of systematic health checks

A health check is a systematic and comprehensive health assessment that is provided annually to adults with IDD, and includes:

specific review of signs and symptoms of health conditions that often co-occur in adults with IDD (See Table 1).

  • screening for changes in adaptive functioning and secondary disability
  • lifestyle counseling
  • medication review and counseling
  • immunization update
  • discussion of caregiver concerns

Many caregivers are the aging parents of the adult patient with IDD and have their own emerging health and support needs. Conversations about advanced planning for the future needs of patients are essential, and may lead to engaging siblings or other family members to assume a greater role in caregiving.

Health checks increase the detection of serious conditions, improved screening for sensory impairments, and increased the immunization rate. Although many patients with IDD generally understand the need for a periodic health examination, physicians can enhance their experience by better explaining the rationale of the health check, providing a sufficient duration of the appointment, and discussing the value of laboratory testing and referrals to specialists. 

Tailoring preventive care

Many of the preventive services guideline recommendations typically utilized by primary care physicians, such as those developed by US Preventive Services Task Force, have been developed for the general population at average risk of conditions of interest. Adults with IDD, depending on the cause of their developmental disability and their behavioral risk profile, might be at significantly higher (or lower) risk of cancer, heart disease, and other conditions than the general population. To address these differences, preventive care guidelines tailored to patients with certain developmental disabilities have been developed, including guidelines specific to adults with Down syndrome, fragile X syndrome, Prader-Willi syndrome, Smith-Magenis syndrome, and 22q11.2 deletion (DiGeorge) syndrome.

Clarifying the molecular genetic etiology of many developmental disabilities has led to more precise understandings about physical and behavioral health issues associated with specific developmental disabilities. For that reason, patients without a known cause for their IDD might benefit from referral to a geneticist – even in early or middle adulthood. Features generally associated with a higher likelihood of an abnormal genetic test result include:

  • a family history of developmental disability
  • a congenital malformation or dysmorphic features
  • a dual diagnosis of developmental disability and co-occurring mental illness
  • hypotonia
  • severe or profound IDD.

Successful implementation of preventive health screening tests often requires ingenuity and the collective creativity of patient, family members, staff, and physician to allay fears and anxieties. Two examples are: women who have been advised to undergo screening mammography might feel less anxious by undergoing tandem screening with their sister or mother, and colorectal cancer screening might be more easily accomplished using a fecal DNA test rather than by colonoscopy. Procedural desensitization strategies and preventive care instructional materials targeting persons with IDD are posted on YouTube and other websites. 

Management of chronic disease

Evidence of health disparities in patients with an IDD includes suboptimal management of chronic diseases, such as diabetes and hypertension, despite contact with a primary care physician. Nonadherence to a medication regimen might be more common in patients who live with their family or in a residential setting where there is less supervision. 

Essentials of mental healthcare

It is estimated that one-third of adults with IDD have significant mental and behavioral healthcare needs. Patients with IDD are subject to the same psychiatric disorders that affect the general population; some also engage in problematic behaviors, such as self-injurious actions, physical or verbal aggression (or both), property destruction, and resistance to caregiving assistance.

Mental and behavioral health problems can have a profound impact on the quality of life of patients with IDD, their peers, and their families and other caregivers. If untreated, these problems can lead to premature institutionalization, loss of employment or desired program participation, fractured social relationships, and caregiver withdrawal and burnout.

Initial evaluation of suspected mental and behavioral health issues begins with careful assessment for medical conditions that might be causing pain and distress, stereotypies, and other problematic behaviors. Common sources of pain and discomfort include dental and other oral disease, dysphagia, gastroesophageal reflux disease, gastritis, constipation, allergic disease, headache, musculoskeletal pathology, lower urinary tract disease, and gynecologic disorders. Identification and optimal treatment of medical conditions might not eliminate problematic behaviors but often decrease their frequency and intensity.

Psychoactive medications are prescribed for many patients with IDD. Many drugs have behavioral adverse effects, such as akathisia, aggression, and disinhibition – leading to a prescribing cascade of psychoactive medication polypharmacy and escalating dosages. Antipsychotic medications are often initiated without a careful diagnosis, explicit outcome targets, or adequate clinical monitoring for effectiveness; in addition, they often lead to insulin resistance, metabolic syndrome, and massive weight gain. Even a physician who is not the prescriber can perform an important advocacy role by critically reviewing psychoactive medications, documenting adverse effects, insisting on a clear therapeutic target, and calling for discontinuation of medications that appear to be ineffective.

Evaluation of mental and behavioral health problems requires a developmental perspective to interpret specific, observable behaviors with a proper clinical lens. For example, many patients with IDD engage in self-talk (soliloquizing) as a means of processing the world around them. This practice might escalate during a time of physical or psychological stress, and the unwary clinician might misinterpret this behavior as psychotic, leading to inappropriate prescribing of antipsychotic medication. Other psychotoform behaviors that, superficially, mimic but are typically not truly psychotic, include talk with or about imaginary friends and repetitive retelling of sometimes elaborate or grandiose tales or assertions. The failure of clinicians to recognize developmentally-determined expressions of distress often leads to a misdiagnosis of schizophrenia or other psychotic illness and, consequently, inappropriate psychopharmacotherapy. 

Primary care physicians, familiar with the use of psychiatric scales for diagnosis and treatment monitoring, should use similar scales that have been developed specifically for patients with IDD (See Table 2). In addition, a psychiatric diagnosis manual, the Diagnostic Manual—Intellectual Disability 2, specific to individuals with IDD (and analogous to the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition) provides modification of diagnostic criteria to account for patients who have difficulty with articulating their internal emotional states and inner thoughts.

Problematic behaviors that are not features of a bona fide psychiatric disorder are often best understood through functional behavioral analysis, which examines antecedents and consequences of problematic behaviors and identifies their predictable outcomes, such as attention, task avoidance, sensory stimulation, and securing of desired items. Rather than being given a prescription for one (or more) psychoactive medications, many adult patients with IDD and problematic behaviors might be best served by consultation with a certified behavior analyst, who will conduct an evaluation and, along with family or residential staff and the patient, craft a behavioral support plan to address core drivers of the undesired behavior. Behavioral support plans may be enriched by multidisciplinary input from a speech and language pathologist, habilitation professionals, occupational and physical therapists, a neuropsychologist, and others.

Resources to help address the physical and the mental and behavioral health problems of these patients are available online through Vanderbilt Kennedy Center’s “Toolkit for primary care providers” ( 

Weight management

Patients with IDD are more likely to live a sedentary lifestyle. Compared to adults who do not have IDD, adults with IDD – especially women and patients with Down syndrome – are reported to have a higher prevalence of obesity. Health-promoting behavioral interventions that rely on a dyadic strategy, such as peer health coaches (i.e., people with IDD who have been trained as a health coach) or mentors (IDD staff trained as health coaches), might be more successful at changing health behaviors among patients with IDD compared to traditional office-based, individual patient education and counseling.

On the other extreme, undesired weight loss demands careful evaluation and management because such loss can reflect a medically significant condition, such as gastroesophageal reflux, constipation, dysphagia, neglect, and cancer.

Boosting the amount and effectiveness of physical activity

Youth with IDD participate in physical activity less often than their neurotypical peers; as a result, they tend to be less fit and have a higher prevalence of obesity. Interventions that focus on sport and movement skills training, such as soccer, basketball, and ball-throwing programs, might be more effective than general physical activity programs. In addition to year-round sports training and athletic competitions, Special Olympics conducts vital health screenings of athletes and supports community-based initiatives that address bias against patients with IDD, promote inclusion, and foster social relationships. In adulthood, fewer than 10% of patients with IDD exercise regularly. By participating in any type of physical activity, there is potential for considerable health benefit in reducing psychosocial stressors, improving mental health, counteracting metabolic syndromes, and, ultimately, reducing morbidity and mortality related to physical inactivity. 

Note: This article was adapted with permission from an article that originally appeared in The Journal of Family Practice. Tyler CV, McDermott M. Transitioning patients with developmental disabilities to adult care. J Fam Pract. 2021;70:280-288. doi: 10.12788/jfp.0232

The original article, with references, can be found at:  


Carl V. Tyler, Jr, MD, MSc; Molly McDermott, DO - Cleveland Clinic Lerner College of Medicine, Case Western Reserve School of Medicine, OH (Dr. Tyler); Cleveland Clinic Family Medicine Residency Program, OH (Drs. Tyler and McDermott). 

Read the article Transitioning Young Adults.