While all of today’s primary care physicians face great challenges in providing high-quality care, those who care for patients with developmental disabilities face even greater challenges. Many of their patients may have difficulty expressing their symptoms and may be limited in how they can participate in the development of their health care plan. In addition, patients may present challenging behavior while visiting physicians, and may not be able or willing to comply with prescribed or recommended treatment.
Persons with disabilities and/or mental retardation are vulnerable to the full range of behavioral problems, which may include non-cooperation, aggression, self-injury, or hyperactivity. (Return to the index to view a document on Psychiatric Co-morbidity.) Non-cooperation at physicians’ offices is often the result of a patient’s feelings of anxiety. Non-cooperation poses a significant challenge to physicians when a patient’s health depends on being examined and tested, undergoing procedures, taking medications, etc.
On many occasions, physicians may not be able to fully explain to the patient the reasons for performing examinations, tests, or procedures. As a result, it is often necessary to work closely with a parent or caregiver to provide those services that are in the patient’s best interest.
Patients who fail to adhere with prescribed or recommended therapies may be at risk for serious medical problems, and thus present a continuing challenge to health care providers.
Although many persons with developmental disabilities are capable of functioning independently in many ways, most require some sort of assistance from their families or other caregivers. Primary care physicians play a critical role in helping families and caregivers understand and implement treatment therapies, and may be valuable in determining the outcome for the patient and entire family.
A patient misunderstands his or her prescribed regimen because he or she:
A patient is unable to adhere to treatment because of:
A patient makes a voluntary choice to alter or forego therapy because:
American Academy of Pediatrics, Committee on Drugs. (1997). Alternative Routes of Drug Administration-Advantages and Disadvantages. Pediatrics, 100(1).
American Academy of Pediatrics, Committee on Psychosocial Aspects of Child and Family Health. (1998). Guidance for Effective Discipline. Pediatrics 101(4), 723-728.
Bond, L. et al. (1997). Attitudes of General Practitioners Towards Health Care for People with Intellectual Disability and the Factors Underlying These Attitudes. Journal of Intellectual Disability Research, 41 (5), 391-400.
Bromley, J and E Emerson. (1995). Beliefs and Emotional Reactions of Care Staff Working with People with Challenging Behaviour. Journal of Intellectual Disability Research, 39(4), 341-352.
Dimond, B. (1998). Noncompliance by Patients. Nursing Ethics, 5(1), 59-63.
Kastner, T., Walsh, K. (1999). Challenging Behavior Problems in Children with Mental Retardation. In: Developmental and Behavioral Pediatrics. (Eds) Parker and Zuckerman. Little Brown.
Olfson, M., Hansell, S., Boyer, CA. (1997). Medication Noncompliance. New Directions for Mental Health Services, 73, 39-49.
Treatment of Destructive Behaviors in Persons with Developmental Disabilities. (1989). National Institutes of Health Consensus Statement Online, 7(9), 1-15.
American College of Allergy, Asthma & Immunology. Patient Noncompliance Often Limits Effectiveness of Asthma Treatment.
Parrish, J. (1996). Behavior Management: Promoting Adaptive Behavior. In ML Batshaw (Ed.), Children with Disabilities (4th ed., pp. X). Baltimore: Paul H. Brookes.
Rubin, I. Leslie and Allen C. Crocker. 1989. Developmental Disabilities: Delivery of Medical Care for Children and Adults. Philadelphia: Lea & Febiger
The Arc, 800-433-5255,
California Department of Developmental Services, 916-654-1690,
California Regional Centers, 915-654-1958,
Exceptional Parent Magazine, 800-247-8080,
Theodore A. Kastner, M.D., M.S.
Felice Weber Parisi, M.D., M.P.H.
Patricia Samuelson, M.D.
Funded by a grant from the California Department of Developmental Services
For more information, contact:
Center for Health Improvement
1330 21st Street, Suite 100
Sacramento, CA 95814
This document does not provide advice regarding medical diagnosis or treatment for any individual case, and any opinions or statements contained in this document are not intended to serve as a standard of medical care. Physicians are encouraged to view the considerations presented in this document in light of evolving scientific information. This document is not intended for use by the layperson. Reproduction of this document may be done with proper credit given to California Department of Developmental Services and the Center for Health Improvement.