Patients who are intellectually and developmentally disabled (IDD) are extremely vulnerable and often present with symptoms of medical conditions in a unique manner that is not consistent with mainstream society. Many patients with IDD who have significant medical issues live in congregate residential facilities where most of their medical care is provided by health care providers who have experience in treating persons with IDD. The current trend focuses on shifting patients with IDD from congregate residential facilities to community-based living arrangements. In congregate residential facilities, clinicians provide health care within the facility and have experience managing and treating these individuals. As more patients with IDD move into community settings, it will be imperative for community-based primary care clinicians to be familiar with the presenting symptoms and common medical conditions that are frequently seen among individuals with IDD and to recommended evidence-based management and treatment regimens. This article describes experiences encountered by health care providers who treat patients with IDD with the intent being to provide general approaches to commonly faced issues.
Intellectual disability is defined as having significant limitations in intellectual functioning and adaptive behavior in relation to the expression of adaptive skills from conceptual, social, and practical standpoints that originate before age 18.1 The following points are essential when applying the definition of intellectual disability:
The limitations in present function should be considered in relation to the community environments that are typical of the individual’s age, peers, and culture.
A valid assessment takes into account cultural and linguistic diversity, in addition to factors that pertain to differences in communication, sensory, motor, and behavioral aspects.
For each individual, limitations frequently coexist with strengths.
A chief purpose for describing limitations is to develop a patient-centered profile of necessary support.
With a patient-centered, personalized support system in place for a sustained period of time, the life functionality of a patient with IDD will generally improve.
An accurate diagnosis of intellectual disability requires three components: an IQ score of approximately 70 or lower, a determination of deficits in adaptive behavior, and manifestation of disability prior to age 18.1 Developmental disability is defined as a severe, chronic disability that is attributable to a mental and/or physical impairment.1 The condition manifests before age 22 and is likely to continue indefinitely.1 Developmental disability results in substantial functional limitations in three or more areas of life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency.1
In 2009, the US Department of Justice’s Civil Rights Division began actively enforcing the Supreme Court’s 1999 ruling in Olmstead v. L.C., which mandates individual states to eradicate unnecessary segregation of individuals with disabilities.2 This ruling is also referred to as the Olmstead decision, as well as Title II of the Americans with Disabilities Act (ADA). This ruling also ensures that services are delivered to patients with disabilities in appropriate integrated settings and are based on individualized needs. This has led to the Civil Rights Division working closely with individual state and federal government officials, nationwide groups for disability rights, and attorneys, in addition to the Department of Health and Human Services, to develop a national program to carry out the integration order of Title II of the ADA. Recent investigations by the Department of Justice have revealed that some states have failed to meet their obligations regarding Title II of the ADA.
During the last three decades, a national trend toward community living for patients with IDD has emerged in place of living in institutional settings. A total of 15,702 individuals with IDD were residing in community settings in 1982, compared with 206,841 in 2007.3 In 2011, approximately 88% of people with IDD in the United States were living in community settings.4 This increase in patients with IDD returning to community settings has also led to recommendations such as the diversion of new admissions to institutions and to the thorough assessment of currently institutionalized individuals with IDD based on the principle that with appropriate support, all such persons can be served in community settings.