Adults with Developmental Disabilities: A Comprehensive Approach to Medical Care

 

Developmental disabilities are attributable to a cognitive impairment, physical impairment, or both. They manifest during the developmental period from birth to early adulthood, and are likely to continue indefinitely. The life expectancy of most persons with developmental disabilities now approaches that of the general population. According to the neurodiversity model of care, developmental disability is accepted as a valued part of human neurologic diversity. The social model focuses on improving participation in society with accommodations such as adaptive equipment or improvements to the social and physical environment. The goal of health care for patients with developmental disabilities is to improve their well-being, function, and participation in family and community. Physicians should communicate directly with their patients, even those who have communication or cognitive differences. Communication may include speech, sign language, writing, letter boards, voice output devices, pictures, facial expressions, gestures, vocalizations, and behavior. Supported decision making is a paradigm, support practice, and emerging legal structure that focuses on assisting patients with communicating their wants and needs as an alternative to guardianship or power of attorney. When establishing care, it is critical to get a detailed history of baseline traits and characteristics in the areas of cognition and communication; neuromuscular function; sensory function such as vision, hearing, and sensory processing; seizure threshold; mental health; and behavior. In general, guidelines for age-appropriate health maintenance in the general population should be followed unless the risk outweighs the benefit for an individual patient. With accurate diagnosis, psychiatric conditions can be treated effectively with the same medical, behavioral, and therapeutic modalities used in the general population. Just like any patient, those with developmental disabilities should have access to a full range of life-sustaining, curative, and end-of-life services.

Developmental disabilities are attributable to a cognitive impairment, physical impairment, or both. They manifest during the developmental period from birth to early adulthood, and are likely to continue indefinitely. Developmental disabilities result in substantial functional limitations in three or more areas of major life activity, including self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency.1 Common diagnoses associated with developmental disabilities include cerebral palsy, intellectual disability, autism, and epilepsy.

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SORT: KEY RECOMMENDATIONS FOR PRACTICE

Clinical recommendationEvidence ratingReferences

Physicians can support full inclusion and access to medical care for patients with disabilities by ensuring that their practices comply with guidelines for physical access.

C

7

Supported decision making should be offered to patients with developmental disabilities as an alternative to guardianship or power of attorney.

C

13, 14

Because unrecognized and undertreated medical problems are common in persons with developmental disabilities, physicians should perform a yearly health check.

C

28, 29


A = consistent, good-quality patient-oriented evidence; B = inconsistent or limited-quality patient-oriented evidence; C = consensus, disease-oriented evidence, usual practice, expert opinion, or case series. For information about the SORT evidence rating system, go to https://www.aafp.org/afpsort.

SORT: KEY RECOMMENDATIONS FOR PRACTICE

Clinical recommendationEvidence ratingReferences

Physicians can support full inclusion and access to medical care for patients with disabilities by ensuring that their practices comply with guidelines for physical access.

C

7

Supported decision making should be offered to patients with developmental disabilities as an alternative to guardianship or power of attorney.

C

13, 14

Because unrecognized and undertreated medical problems are common in persons with developmental disabilities, physicians should perform a yearly health check.

C

28, 29


A = consistent, good-quality patient-oriented evidence; B = inconsistent or limited-quality patient-oriented evidence; C = consensus, disease-oriented evidence, usual practice, expert opinion, or case series. For information about the SORT evidence rating system, go to https://www.aafp.org/afpsort.

The life expectancy of most persons with developmental disabilities now approaches that of the general population.2 For example, the mean age of death for a person with an intellectual disability was 19 years in the 1930s and 66 years by the 1990s, and it continues to improve.2 The civil rights of persons with disabilities have also advanced as they have been fully integrated into mainstream society, including medical practices. Family physicians can help

The Author

CLARISSA KRIPKE, MD, FAAFP, is director of developmental primary care and a clinical professor in the Department of Family and Community Medicine at the University of California, San Francisco.

Address correspondence to Clarissa Kripke, MD, University of California, San Francisco, 500 Parnassus Ave., ME3E Box 0900, San Francisco, CA 94143 (e-mail: Clarissa.Kripke@ucsf.edu). Reprints are not available from the author.

Author disclosure: No relevant financial affiliations.

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