Medical Care of Adults with Intellectual and Developmental Disabilities
The prevalence of Intellectual Disability/Developmental Disability (ID/DD) comprises about 1% of the population. Persons with ID/DD often have undiagnosed or poorly treated medical disorders; have shorter life expectancy and depending on the underlying causation of their disability, are at risk for developing certain disorders.
Screening of athletes participating in Special Olympics has documented "widespread health problems" and lack of training of health professionals to provide care to this population. An overwhelming majority of persons with ID/DD live in the community and are expected to receive primary medical care at community-based facilities. However, their access to care has been a problem, especially for adults, less so for children, since most pediatricians receive at least some training in ID/DD and many are trained in Developmental-Behavioral Pediatrics. These disparities in health and access to health care were identified in the Surgeon General Report of 2002, which also described existing creative programs aiming to eliminate these gaps in care. None of these programs were in Massachusetts with the exception of Tufts Dental Facilities for people with ID/DD.
This access problem to health care is not limited to the United States. Studies list the following factors underlying this health disparity: poor communication between the health care providers and patients (who often have deficient language skills); lack of training of health professionals; "diagnostic overshadowing," which is the tendency to assume that the patient's complaints are due to the intellectual disability; not obtaining detailed past history (due to poor communication and lack of sufficient time). Negative attitudes to patients with ID are also a problem and physicians tend to see them as difficult to care for. Most, if not all, primary care physicians have the medical knowledge and competence needed to provide medical care to persons with ID/DD. However, additional training and practice modification are needed to achieve among others, the following:
To increase knowledge of associated syndromes /disorders
To increase collaboration with other health-related professionals who provide services to this population of patients within the same community
- Make reasonable office and staff accommodations in ascertaining sensitivity to procedures.
- Document a comprehensive health history, preferably in advance, and utilizing multiple informants if possible.
- Develop skills of developmentally appropriate and respectful communication with the patient (rather than with the caregivers only).
- Define relevant legalities such as guardianship and its limitations concerning medical care; end-of-life decisions, major procedures, abortion, sterilization, etc.
- Recognize medical co-morbidities common in certain ID/DD associated syndromes.
Leslie Rubin, M.D .
Morehouse School of Medicine
Developmental Pediatric Specialists
Innovative Solutions for Disadvantage and Disability
Southeast Pediatric Environmental Health Specialty Unit at Emory University
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