The Quality of Health Care for Adults with Developmental Disabilities

Abstract

SYNOPSISObjective. The purpose of this study was to determine the health status of adults with developmental disabilities residing in community settings and the quality of the preventive, medical, dental, and psychiatric services they receive.Methods. Data were collected on a sample of 353 adults residing in Los Angeles, California, in 1997. Historical data were obtained from study subjects or caregivers, physical and dental examinations were performed, blood was drawn for analysis, and a psychiatrist reviewed medical records for reports of psychiatric diagnoses and consultations.Results. Health markers, such as rates of obesity, and laboratory test results of routine screening panels including blood cell counts, hemoglobin, and hematocrits; blood concentrations of liver enzymes and other enzymes, cholesterol, and tryglycerides; and urinalyses were within normal limits for an adult population. However, preventive services were notably lacking, especially for individuals living at home. Fewer than half of the study subjects had received influenza vaccine; only a third of those living alone or with family or friends had received this vaccination. Chart audits revealed that about a third received psychotropic medications, but only 24% of these individuals had psychiatric consultations noted in their record. Further, 36% of this medicated group received psychotropic drugs without any identifiable diagnosis, and simultaneous receipt of two or more antipsychotics was not uncommon.Conclusions. Given that the U.S. health care system fails to ensure the provision of preventive services for all people, including the developmentally disabled, a systematic overhaul is necessary to establish an effective quality assurance program that will provide preventive medical, dental, and psychiatric services for people with developmental disabilities.

A cascade of disparities: Health and health care access for people with intellectual disabilities

“…An exception was mental health conditions, which were noted to decrease with age in both studies. Similar to other studies [Beange et al, 1995;Lewis et al, 2002], high rates of neurological and psychiatric conditions were observed. Comparison of their findings with comparable general US population data led the US authors to speculate that proxy reporting leads to underrecognition of health problems in persons with ID.…”

“…Approximately one-half were medicated for behavioral problems; 96% were prescribed two or more medications and 22% were prescribed seven or more. In the United States, Lewis et al [2002] examined a representative sample of adults (mild to profound ID) living in a variety of community settings. More than a quarter of their sample had epilepsy, about half were receiving psychotropic medications, more than half were overweight or obese, and only 16% had dental status rated as "good.…”

“…Record reviews indicated that psychiatric diagnoses had not been made to support this level of medication use. In the United States, Lewis et al [2002] reported that 36% of their medicated group had no identifiable diagnosis.…”

“…Lewis and colleagues [2002] noted higher rates of "poor" and lower rates of "good" oral health for persons with ID living in community care facilities in the United States compared with those living with family or friends or living in their own homes. Poor oral hygiene is implicated as a primary cause, along with lack of preventive care [Cumella et al, 2000;Lewis et al, 2002].…”

“…Health care providers in many countries have raised concerns about compromised health care quality for individuals with ID living in the community [Hand, 1999;McGilloway and Donnelly, 1999;Nottestad and Linaker, 1999;Lewis et al, 2002;Lennox et al, 2003;Cornwell, 2004]. Specific concerns are that persons with ID living in the community need access to skilled health care clinicians and direct care providers who are knowledgeable about the person and their conditions; without such care there is greater risk for inadequate attention to potentially life-threatening conditions.…”